Sleeping Disorder » Obstructive Sleep Apnea

OT: I'm AWAKE!

admin — Thu, 15 Dec 2005 00:00:00 +0000

Question:

"Tennessee Tony" wrote

Response:

::Dear Group, ::Last night was my first night using my CPAP. I slept straight through the ::night (well, just one time up for bladder relief), and when I got up this ::morning I was awake and alert almost immediately! It usually takes me ::several hours and a lot of coffee to reach this level. I don’t remember the ::last time I felt like this. I just had to share my happiness with you all. :: ::I’d do pirouettes if I could, but I think I’ll just settle for a big ol’ ::grin. Deirdre, this is wonderful news! I`m so happy for you Wishing you continued sweet dreams and peaceful sleep. (((((Deirdre))))) P.S. I think I finally need glasses! I keep reading "CPAP" as CRAP Jackie ~*~I love to see a young girl go out and grab the world by the lapels. Life’s a bitch. You’ve got to go out and kick ass~*~ ~~ Maya Angelou — The charter is available at: http://readystump.algebra.com/~asapm

Response:

That’s GREAT!!! I have two neighbours on those kind of machines and they get great relief, especially one of them. Wishing you continued success. — Ron P Just remember….if the world didn’t suck, we’d all fall off. — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Too Bad. — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Thank you everybody. To those of you who rarely wake up feeling refreshed and ready to go into your day, and to those of you who snore (more than just a little bit), I heartily recommend having a sleep study done. Talk to your doctor about where to have it done in your area. If the study shows you have OSA (obstructive sleep apnea), there is extremely effective relief available. If you decide to have the study done, and want my first-hand account of what to expect, please email me. I learned a lot about apnea and the treatment for it in the sleep_apnea group at yahoo.com. Good supportive people there, too. And it’s not just about getting a good night’s sleep. OSA can lead to heart problems. From every testimonial I’ve read about the benefits of using the CPAP, it’s

very likely I can look forward to generally increased energy, a reduction of the depression that has plagued me for such a long time, and, as weird as it sounds, loss of unwanted weight. All of which will contribute to an overall improvement in my quality of life, and specifically will increase my ability to take care of Mom and maybe even get my hell-hole of a room cleaned

Response:

– Hide quoted text — Show quoted text – Thank you everybody. To those of you who rarely wake up feeling refreshed and ready to go into your day, and to those of you who snore (more than just a little bit), I heartily recommend having a sleep study done. Talk to your doctor about where to have it done in your area. If the study shows you have OSA (obstructive sleep apnea), there is extremely effective relief available. If you decide to have the study done, and want my first-hand account of what to expect, please email me. I learned a lot about apnea and the treatment for it in the sleep_apnea group at yahoo.com. Good supportive people there, too. And it’s not just about getting a good night’s sleep. OSA can lead to heart problems. From every testimonial I’ve read about the benefits of using the CPAP, it’s very likely I can look forward to generally increased energy, a reduction of the depression that has plagued me for such a long time, and, as weird as it sounds, loss of unwanted weight. All of which will contribute to an overall improvement in my quality of life, and specifically will increase my ability to take care of Mom and maybe even get my hell-hole of a room cleaned

All the blood suckers have gone to their caves, they’ll be out later, don’t worry! — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Did they have to do a sleep study on you in order to get the unit? I thought a CPAP was for pain relief, or is it both? Tono — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi Tono, A sleep study is required by Medicare (which is my insurance source) to get the CPAP, so I think it would be logical to assume most insurance companies would require it as well. My doctor had me get the sleep study because I had symptoms of obstructive sleep apnea. This from an appropriate website: a.. Do you snore loudly and disturb your family and friends? b.. Do you have daytime sleepiness? c.. Do you wake up frequently in the middle of the night? d.. Do you have frequent episodes of obstructed breathing during sleep? e.. Do you have morning headaches or tiredness? I don’t know about CPAP being used for pain relief — that’s a new one to me. I believe some COPD (Chronic Obstructive Pulmonary Disorder) patients use CPAP, so perhaps it relieves them of chest pain. That’s just a guess on my part. On the off chance that there’s something *else called CPAP, this one is "Continuous Positive Airway Pressure". Nasal CPAP delivers air into your airway through a specially designed nasal mask or pillows. The mask does not breathe for you; the flow of air creates enough pressure when you inhale to keep your airway open. What specific pain relief do you associate with CPAP? Deirdre

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

- Hide quoted text — Show quoted text – Hi Tono, A sleep study is required by Medicare (which is my insurance source) to get the CPAP, so I think it would be logical to assume most insurance companies would require it as well. My doctor had me get the sleep study because I had symptoms of obstructive sleep apnea. This from an appropriate website: a.. Do you snore loudly and disturb your family and friends? b.. Do you have daytime sleepiness? c.. Do you wake up frequently in the middle of the night? d.. Do you have frequent episodes of obstructed breathing during sleep? e.. Do you have morning headaches or tiredness? I don’t know about CPAP being used for pain relief — that’s a new one to me. I believe some COPD (Chronic Obstructive Pulmonary Disorder) patients use CPAP, so perhaps it relieves them of chest pain. That’s just a guess on my part. On the off chance that there’s something *else called CPAP, this one is "Continuous Positive Airway Pressure". Nasal CPAP delivers air into your airway through a specially designed nasal mask or pillows. The mask does not breathe for you; the flow of air creates enough pressure when you inhale to keep your airway open. What specific pain relief do you associate with CPAP?

I don’t know, I guess I just have it mixed up with something else…. I remember, a tens unit. At least it has the same number of letters!? Tono — The charter is available at: http://readystump.algebra.com/~asapm

Response:

That is brilliant news Deirdre! I am so envious of you. — _TJ_

Response:

Hi, Deirdre, Wow, now that’s what I call "overnight" success. So glad the machine is helping you. smiles, Elise

– Hide quoted text — Show quoted text – Dear Group, Last night was my first night using my CPAP. I slept straight through the night (well, just one time up for bladder relief), and when I got up this morning I was awake and alert almost immediately! It usually takes me several hours and a lot of coffee to reach this level. I don’t remember the last time I felt like this. I just had to share my happiness with you all. I’d do pirouettes if I could, but I think I’ll just settle for a big ol’ grin. Love Deirdre "Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned." ~Buddha~ Every once in a while, I update my blog. Check it out, and if it’s been more than 2 weeks since I’ve written, please scold me. Thank you. http://home.earthlink.net/~deirdre1952/ — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hey, that’s great! It worked. I’m so happy for you. {{{{{Deirdre}}}}} Love, Di

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

That’s *great*. Nothing like a good night’s rerst. Preferably every night. Thanks for sharing. Philip "Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned." ~Buddha~ Every once in a while, I update my blog. Check it out, and if it’s been more than 2 weeks since I’ve written, please scold me. Thank you. http://home.earthlink.net/~deirdre1952/

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

(((((Deirdre)))))) Finally!!!! You’ve needed this for soooo long. I can’t wait to see what the long term effects of getting good rest will be for you. Keep us informed. Love, Sally — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Deirdre, this is wonderful news. I know I have read about CPAP but I forget what it is. I will Google. I snore like the dickens and I know I lose sleep because of it. Does a CPAP help with that sort of thing? Wishing you many nights of blessful (oops; meant to type "blissful" but the typo actually works too!) sleep from now on. xxoo Anne — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Great Deirdre! I have chronic insomnia and wonder if that would help me. My brother in law uses CPAP and he swears by it. I hope you are feeling good again this morning. Vicki — The charter is available at: http://readystump.algebra.com/~asapm

Response:

That’s amazing! I’m glad the CPAP is helping you so much. Chip — The charter is available at: http://readystump.algebra.com/~asapm

Response:

That’s some good news Deirdre. I can’t imagine getting up in the morning and feeling alert, I’m more like a zombie. I gotta admit coffee is a big crutch for me. I’m trying to cut down but it’s hard. — there is no .sig

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

Dear Group, Last night was my first night using my CPAP. I slept straight through the night (well, just one time up for bladder relief), and when I got up this morning I was awake and alert almost immediately! It usually takes me several hours and a lot of coffee to reach this level. I don’t remember the last time I felt like this. I just had to share my happiness with you all. I’d do pirouettes if I could, but I think I’ll just settle for a big ol’ grin. Love Deirdre "Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned." ~Buddha~ Every once in a while, I update my blog. Check it out, and if it’s been more than 2 weeks since I’ve written, please scold me. Thank you. http://home.earthlink.net/~deirdre1952/ — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hello!

admin — Thu, 17 Mar 2005 00:00:00 +0000

Question:

Hiya Susie. You’ve found a great group of folks that are very willing to help problem solve and discuss issues related to sleep. I am a mouth breather (sounds like a true confession, eh?) and at time experience difficulties related to it. Everyone here has been most helpful! I took to my CPAP as a duck takes to water. . . I hope your experience is equally easy. Raleighgirl "Susie Quill" wrote in message

news:42395b40$1_2@127.0.0.1… | I’m so excited that I found this group. Have been looking for a list on | sleep. I feel like I’ve just walked in the door of my home and want to | yell, "Honey…..I’m home." : ) | Hope I can be a good member on this list. I have severe obstructive sleep | apnea. I think I’ve had it for ten years….when I was dx. with | fibromyalgia ten years ago, maybe I should have been sent for a sleep study | instead. | | I’ll give a longer history later. I’ve had my c-pap machine about two weeks | now. | Didn’t seem to be helping much, but figured out I must be a mouth breather, | so I’m using a face strap that a friend gave me that didn’t work for her to | keep my mouth shut at night. I think it is kicking in now. Had the best | day I’ve had in I don’t know how long today. (The strap by itself didn’t | work for me when I tried it last summer) Not perfect, but more energy. I | have hope finally. | | Well, I’m going to go read some of your messages now. This is great! | Susie | | | | | —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- | http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups | —-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

"Susie Quill" wrote: >I’m so excited that I found this group. Have been looking for a list on >sleep. I feel like I’ve just walked in the door of my home and want to >yell, "Honey…..I’m home." : )

Great! How was traffic? >Hope I can be a good member on this list. I have severe obstructive sleep >apnea. I think I’ve had it for ten years….when I was dx. with >fibromyalgia ten years ago, maybe I should have been sent for a sleep study >instead.

We’ve had at least a couple of posters whose fibromyalgia was relieved by CPAP. Tom

Response:

I’ve been using one called ‘Veronique’ for quite a while. Lasts a year or so before it gets too worn. Ugly as sin, but very effective. regards, eric pearson nonono.ericp1.non…@nonono.fuse.net On Sat, 19 Mar 2005 07:27:50 +1000, "Susie Quill" – Hide quoted text — Show quoted text - wrote: >The one I have is a wide elastic chin strap with a place for the ears. I >think I need a newer one though. >Thanks, >Susie >"eric pearson" wrote in message >news:7c4k31tte10datnt2s8p19tak4lkdbjr36@4ax.com… >> Don’t get discouraged early. Many folks take a few weeks before CPAP >> really feels like it is helping. As far as straps, I’ve found the most >> effective ones to be the wide elastic bands. >> regards, >> eric pearson >> nonono.ericp1.non…@nonono.fuse.net >> On Thu, 17 Mar 2005 20:23:07 +1000, "Susie Quill" >> wrote: >>>I’m so excited that I found this group. Have been looking for a list on >>>sleep. I feel like I’ve just walked in the door of my home and want to >>>yell, "Honey…..I’m home." : ) >>>Hope I can be a good member on this list. I have severe obstructive sleep >>>apnea. I think I’ve had it for ten years….when I was dx. with >>>fibromyalgia ten years ago, maybe I should have been sent for a sleep >>>study >>>instead. >>>I’ll give a longer history later. I’ve had my c-pap machine about two >>>weeks >>>now. >>>Didn’t seem to be helping much, but figured out I must be a mouth >>>breather, >>>so I’m using a face strap that a friend gave me that didn’t work for her >>>to >>>keep my mouth shut at night. I think it is kicking in now. Had the best >>>day I’ve had in I don’t know how long today. (The strap by itself didn’t >>>work for me when I tried it last summer) Not perfect, but more energy. I >>>have hope finally. >>>Well, I’m going to go read some of your messages now. This is great! >>>Susie >>>—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet >>>News==—- >>>http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ >>>Newsgroups >>>—-= East and West-Coast Server Farms – Total Privacy via Encryption >>>=—- >—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- >http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups >—-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

- Hide quoted text — Show quoted text -Susie Quill wrote: > "Howard Shubs" wrote in message > news:howard-2C481D.07524017032005@news.newsguy.com… >>In article <42395b40$…@127.0.0.1>, >>"Susie Quill" wrote: >>>Well, I’m going to go read some of your messages now. This is great! >>I hope you still feel that way after you get caught up. >>– >>"It is very easy to be blinded to the essential uselessness of them by the >>sense of achievement you get from getting them to work at all." >>Hitchiker’s >>Guide to the Galaxy on the Sirius Cybernetics Corporation. Does that seem >>familiar to anything on THIS planet at THIS time? > Well, after reading for a while, I found out I couldn’t follow much because > I don’t know what all the abbreviations mean. LOl I’ll have to work on > that. > Thanks, > Susie

Just ask. The faster we get you on-board, the faster you’ll be able to help others .

Response:

The one I have is a wide elastic chin strap with a place for the ears. I think I need a newer one though. Thanks, Susie "eric pearson" wrote in message

news:7c4k31tte10datnt2s8p19tak4lkdbjr36@4ax.com… – Hide quoted text — Show quoted text -> Don’t get discouraged early. Many folks take a few weeks before CPAP > really feels like it is helping. As far as straps, I’ve found the most > effective ones to be the wide elastic bands. > regards, > eric pearson > nonono.ericp1.non…@nonono.fuse.net > On Thu, 17 Mar 2005 20:23:07 +1000, "Susie Quill" > wrote: >>I’m so excited that I found this group. Have been looking for a list on >>sleep. I feel like I’ve just walked in the door of my home and want to >>yell, "Honey…..I’m home." : ) >>Hope I can be a good member on this list. I have severe obstructive sleep >>apnea. I think I’ve had it for ten years….when I was dx. with >>fibromyalgia ten years ago, maybe I should have been sent for a sleep >>study >>instead. >>I’ll give a longer history later. I’ve had my c-pap machine about two >>weeks >>now. >>Didn’t seem to be helping much, but figured out I must be a mouth >>breather, >>so I’m using a face strap that a friend gave me that didn’t work for her >>to >>keep my mouth shut at night. I think it is kicking in now. Had the best >>day I’ve had in I don’t know how long today. (The strap by itself didn’t >>work for me when I tried it last summer) Not perfect, but more energy. I >>have hope finally. >>Well, I’m going to go read some of your messages now. This is great! >>Susie >>—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet >>News==—- >>http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ >>Newsgroups >>—-= East and West-Coast Server Farms – Total Privacy via Encryption >>=—-

—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups —-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

I think I’m getting to be like you. I was taking the mask off during the night after several hours, but now I’m able to stay with it on all night. Thanks Laexpat, Susie "Laexpat" wrote in message

news:1cd4b12089a670dbe4949efbd462d77f@localhost.talkaboutsupport.com… > My name is LaExpat and I’m a CPAPaholic!

Response:

Thanks Judy. "Judy Simon" wrote in message

news:_5f_d.13709$FB6.1409@trndny09… – Hide quoted text — Show quoted text -> Susie Quill wrote: >> I’m so excited that I found this group. Have been looking for a list on >> sleep. I feel like I’ve just walked in the door of my home and want to >> yell, "Honey…..I’m home." : ) >> Hope I can be a good member on this list. I have severe obstructive >> sleep apnea. I think I’ve had it for ten years….when I was dx. with >> fibromyalgia ten years ago, maybe I should have been sent for a sleep >> study instead. >> I’ll give a longer history later. I’ve had my c-pap machine about two >> weeks now. >> Didn’t seem to be helping much, but figured out I must be a mouth >> breather, so I’m using a face strap that a friend gave me that didn’t >> work for her to keep my mouth shut at night. I think it is kicking in >> now. Had the best day I’ve had in I don’t know how long today. > Congratulations, Susie! You’re on your way. > (The strap by itself didn’t >> work for me when I tried it last summer) Not perfect, but more energy. >> I have hope finally. > You’ve found the right place. Keep posting here, there’s plenty of > support and a lot of helpful information. > Judy Simon

Response:

"Howard Shubs" wrote in message

news:howard-2C481D.07524017032005@news.newsguy.com… > In article <42395b40$…@127.0.0.1>, > "Susie Quill" wrote: >> Well, I’m going to go read some of your messages now. This is great! > I hope you still feel that way after you get caught up. > — > "It is very easy to be blinded to the essential uselessness of them by the > sense of achievement you get from getting them to work at all." > Hitchiker’s > Guide to the Galaxy on the Sirius Cybernetics Corporation. Does that seem > familiar to anything on THIS planet at THIS time?

Well, after reading for a while, I found out I couldn’t follow much because I don’t know what all the abbreviations mean. LOl I’ll have to work on that. Thanks, Susie —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups —-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

"Susie Quill" wrote in message

news:42395b40$1_2@127.0.0.1… – Hide quoted text — Show quoted text -> I’m so excited that I found this group. Have been looking for a list on > sleep. I feel like I’ve just walked in the door of my home and want to > yell, "Honey…..I’m home." : ) > Hope I can be a good member on this list. I have severe obstructive sleep > apnea. I think I’ve had it for ten years….when I was dx. with > fibromyalgia ten years ago, maybe I should have been sent for a sleep > study instead. > I’ll give a longer history later. I’ve had my c-pap machine about two > weeks now. > Didn’t seem to be helping much, but figured out I must be a mouth > breather, so I’m using a face strap that a friend gave me that didn’t work > for her to keep my mouth shut at night. I think it is kicking in now. > Had the best day I’ve had in I don’t know how long today. (The strap by > itself didn’t work for me when I tried it last summer) Not perfect, but > more energy. I have hope finally. > Well, I’m going to go read some of your messages now. This is great! > Susie

Welcome to the land of the HooverHeads. If you haven’t yet found them, check some of the commercial sites. They’ll give you an idea of the kind of hardware that’s out there (I’m partial to cpapman.com. Others use other suppliers). Paul R

Response:

In article <42395b40$…@127.0.0.1>, "Susie Quill" wrote: > Well, I’m going to go read some of your messages now. This is great!

I hope you still feel that way after you get caught up. — "It is very easy to be blinded to the essential uselessness of them by the sense of achievement you get from getting them to work at all." Hitchiker’s Guide to the Galaxy on the Sirius Cybernetics Corporation. Does that seem familiar to anything on THIS planet at THIS time?

Response:

My name is LaExpat and I’m a CPAPaholic!

Response:

Don’t get discouraged early. Many folks take a few weeks before CPAP really feels like it is helping. As far as straps, I’ve found the most effective ones to be the wide elastic bands. regards, eric pearson nonono.ericp1.non…@nonono.fuse.net On Thu, 17 Mar 2005 20:23:07 +1000, "Susie Quill" – Hide quoted text — Show quoted text - wrote: >I’m so excited that I found this group. Have been looking for a list on >sleep. I feel like I’ve just walked in the door of my home and want to >yell, "Honey…..I’m home." : ) >Hope I can be a good member on this list. I have severe obstructive sleep >apnea. I think I’ve had it for ten years….when I was dx. with >fibromyalgia ten years ago, maybe I should have been sent for a sleep study >instead. >I’ll give a longer history later. I’ve had my c-pap machine about two weeks >now. >Didn’t seem to be helping much, but figured out I must be a mouth breather, >so I’m using a face strap that a friend gave me that didn’t work for her to >keep my mouth shut at night. I think it is kicking in now. Had the best >day I’ve had in I don’t know how long today. (The strap by itself didn’t >work for me when I tried it last summer) Not perfect, but more energy. I >have hope finally. >Well, I’m going to go read some of your messages now. This is great! >Susie >—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- >http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups >—-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

Susie Quill wrote: > I’m so excited that I found this group. Have been looking for a list on > sleep. I feel like I’ve just walked in the door of my home and want to > yell, "Honey…..I’m home." : ) > Hope I can be a good member on this list. I have severe obstructive sleep > apnea. I think I’ve had it for ten years….when I was dx. with > fibromyalgia ten years ago, maybe I should have been sent for a sleep study > instead. > I’ll give a longer history later. I’ve had my c-pap machine about two weeks > now. > Didn’t seem to be helping much, but figured out I must be a mouth breather, > so I’m using a face strap that a friend gave me that didn’t work for her to > keep my mouth shut at night. I think it is kicking in now. Had the best > day I’ve had in I don’t know how long today.

Congratulations, Susie! You’re on your way. (The strap by itself didn’t > work for me when I tried it last summer) Not perfect, but more energy. I > have hope finally.

You’ve found the right place. Keep posting here, there’s plenty of support and a lot of helpful information. Judy Simon

Response:

I’m so excited that I found this group. Have been looking for a list on sleep. I feel like I’ve just walked in the door of my home and want to yell, "Honey…..I’m home." : ) Hope I can be a good member on this list. I have severe obstructive sleep apnea. I think I’ve had it for ten years….when I was dx. with fibromyalgia ten years ago, maybe I should have been sent for a sleep study instead. I’ll give a longer history later. I’ve had my c-pap machine about two weeks now. Didn’t seem to be helping much, but figured out I must be a mouth breather, so I’m using a face strap that a friend gave me that didn’t work for her to keep my mouth shut at night. I think it is kicking in now. Had the best day I’ve had in I don’t know how long today. (The strap by itself didn’t work for me when I tried it last summer) Not perfect, but more energy. I have hope finally. Well, I’m going to go read some of your messages now. This is great! Susie —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! 120,000+ Newsgroups —-= East and West-Coast Server Farms – Total Privacy via Encryption =—-

Response:

Life with the virus (long)

admin — Fri, 11 Mar 2005 00:00:00 +0000

Question:

Went to an Italian wedding up to Elmo’s old stomping grounds in Joisey. Hollywood can’t come close to replicating an event of this much fun but songsters leo sayer & david courtney sho’ enuff did. This is dedicated to all of y’all that have been on ribavirin are on the stuff now or who are fixen to. LONG TALL GLASSES Writers: leo sayer & david courtney I was travellin’ down the road, feelin’ hungry and cold I saw a sign sayin’ food and drinks for everyone So naturally I thought I would take me a look inside I saw so much food, there was water comin’ from my eye Yeah there was ham an’ there was turkey, there was caviar An’ long tall glasses, with wine up to yar An’ then somebody grabbed me, threw me outta my chair Said before you can eat, you gotta dance like fred astaire You know I can’t dance, you know I can’t dance You know I can’t dance, you know I can’t dance I can’t dance I am a man of the road — a hobo by name I don’t seek entertainment, just poultry and game But if it’s all the same to you, then yes I will try my hand If you were as hungry as me then I’m sure you would understand Hmmm Now wait a minute Let me see now Of course I can dance of course I can dance I’m sure I can dance, I’m sure I can dance.. I can dance I can dance I really hit the floor Ah feels good Look at me dancin’ I did a two-step, quick-step and a bossa nova A little victor silvester, and a rudy valentino You should a seen me movin’, right across the floor Hand me down my tuxedo, next week I’m comin’ back for more I can dance — oh yes! I can dance Look at me dancin’ the floor movin’ I feel good — I can dance I can dance, I can dance, I can dance.

Response:

I’m back to normal Russ! Still trying to lose the extra 10 pounds I gained over the 48 weeks but it will happen. I really feel great these days! I’m beginning to worry a little about my one year svr that’s due in May. Every I get a little ache or get a little too tired, I fear that the virus has returned. Take care ! hc "Russ" wrote in message news:11363pl885jne71@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Heppichik!! How are you feeling these days? I would like to know how your > energy level is today now that your free of the dragon. Sure is good to hear > from you. We were on the treatment together almost to the week. I’m glad you > got your SVR and I hope life is good for you. > Thanks > — > Russ > Visit Alaska @ http://www.tannersacre.com > "heppiechik" wrote in message > news:63DYd.655$Q85.164@fe02.lga… > > Heeey Russ, > > We’re here for you and ain’t nothing wrong with ad’s. I chose to stay on > > Zoloft post tx and I’ll be 1 year post tx in May. Hang in there my friend, > > you’re a survivor!! > > hc > > "Russ" wrote in message > > news:11342q2lm305677@corp.supernews.com… > > > Whew, tough week here for me folks, here goes my spiel…… > > > Most of you know all this but for the newcomers I’ll just retell it all. > > > Three years ago I was diagnosed with the Hep C. Before I found that out > I > > > went in for a full physical and my main complaint was "Why am I so tired > > all > > > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver > function > > > tests which were very normal and low) this and that. Right after that I > > went > > > to Seattle and was visiting with my old buddy from high school. He > quietly > > > tells me he as Hep C. I asked him how he found out how. "Well I went to > > the > > > doctor to see why I was so fucking tired all the time." > > > Fuck > > > I go home and call the doctor to check for that and bingo I have Hep c. > > The > > > usually up and down moody swings in trying to deal with that thought, > but > > I > > > got through it fairly fast. Meanwhile the usually fatigue and on/off > vague > > > "flu like symptoms" that would come and go. > > > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > > Pegasys > > > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > > the > > > same time. My thyroid went Hyper about 4 months into the treatment. > That > > > was like being on speed, I was pretty nuts at the time. About month 5 > the > > > thyroid just quit and then I was cold, tired and very lethargic and > tired. > > I > > > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > > were > > > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > > Not > > > too bad. But while in the last few months of treatment I would have > these > > > occasional episodes of extreme anxiety and sleeplessness. Those would > last > > a > > > week or two and then just go away. On the week of my last shot I was > > having > > > one of those episodes and the BCLD was able to see my anxiety (my hands > > were > > > just shaking) and prescribed me some Xanax. I was taking Ambien for > sleep, > > > but all those would do was make me have double vision, I would never > feel > > > tired and they didn’t work for sleep at all. Xanax did fine, I would at > > > least "feel sleepy" and could get a good nights rest. I didn’t need them > > all > > > the time. Normally I never have problems sleeping. If I’m tired from > work > > I > > > just conk out and wake up refreshed. > > > Last December 1st I got the news that I had relapsed and my Viral Load > was > > > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was > done > > > last year about the first week of June.) I had so much energy I felt > like > > I > > > was two feet off the ground. I felt wonderful and life was good. About > mid > > > September I started to feel a little bit tired, but chalked that up to > the > > > usual long hours of working construction. October last year the fatigue > is > > > really getting noticeable, AND I start to have the "flu like symptoms" > > > coming on. In the back of my mind I’m thinking relapse, but trying to > keep > > a > > > positive mind I try not to think that way. AT the same time my right > > > shoulder just blows up and is very painful. I see the doc on that and do > > PT > > > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > > > October I don’t feel very good at all. About mid November I go in for my > > > blood draw for my 6-month post PCR and CBC. My shoulder was feeling > better > > > and I was starting to feel a bit better with the "flu". I wasn’t > surprised > > > Dec. 1st, my appointment with the BCLD that I had relapsed. > > > Well that was a big let down and a bit depressing. December 7th, I take > > off > > > for a two month vacation and decide to "just put it behind me for now > and > > > have a good time". And I did. A month in the states, most of it in > > > California in some nice sunny weather, then a wonderful month in South > > > America. It was a good time. > > > Then I’m back in the cold dark of Alaska and within 3 days of being home > > > they call from work wanting me to come in. Well fuck me I thought, it’s > a > > > bit cold to be working but they said it’s in the shop and that would be > > ok, > > > just working 4-10 hour days. After the the first week I was outside in > the > > > cold (well below freezing!!!) working and it’s hard. The fatigue factor > is > > > really getting to me. After just 4 10 hour days I’m just beat. I know > it’s > > > the Hep causing the fatigue and now the depression is coming on. > > > I think, "In two more years I can take early retirement (enough to live > > on), > > > but man can I handle this line of work??" More depression. Now I’m > falling > > > into a pretty dark hole here guys and gals. Depression is something I > have > > > lived with all my life. It’s in my family. My dad was severely depressed > > and > > > checked out when I was 7. My brother is severely depressed and is doing > > > 10-15 in the pen for nearly killing his wife. > > > I used to deal with depression with drugs and alcohol till I was in so > > much > > > trouble (late 1980’s) that I saw the light, went to anger management and > > AA > > > and cleaned up. For many years I felt great, was very energetic and life > > was > > > good (till my ex-wife started drinking again). After my divorce in 1998 > I > > > felt pretty good and health was fine. > > > But in the last 4-5 years there was this slow progression of fatigue but > > > depression wasn’t a factor even then. > > > Back to the last month and starting back at work the depression is > working > > > me hard. The last three weeks I start thinking about "eating the end of > a > > > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > > that > > > I get constant spam emails about getting over the internet and a long > > > snowmachine ride to where no one would ever find me." Pretty morbid > eh??? > > > Then just like that I’ll have a (few and far) day where I’m fine and > > > laughing with the guys at work. > > > Manic depression at work here. > > > Two weeks ago, the anxiety is starting up, irritable, cranky, and > starting > > > to have problems sleeping. And all the time thinking about life being > > tired > > > all the time. More depression. > > > The less I sleep, the edgier I get. The edgier I get the less I sleep. > > The > > > less I sleep the more depressed I get. > > > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > > if > > > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > > > atom bomb over Nagasaki. Not a good idea, there will be two emergency > > > vehicles, one for the guy going to the hospital and one for me to the > > > crowbar hotel. > > > Yesterday I was so fucking tired I could hardly drive to work. It took > all > > > my inner strength to hang in there. > > > And I realize, I can’t do this by myself and need help. I called the my > > > primary Doctor for an appointment. I go in today at 4:20 > > > Last night I’m talking to Kiak (not a poster here but she did the > > treatment > > > with me, she was type 2b and today is clear of the virus, bless her pea > > > picking heart), I consider her someone not only my best friend but > someone > > I > > > can confide in( and counting my friends here at ASH-C). I’m so tired I > can > > > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > > night > > > and FINALLY I fall into a long 11 hour sleep. > > > I feel a bit better getting some sleep but the anxiety and tiredness is > > > still there. I’m writing notes and thoughts to pass on to the doc. It > goes > > > something like this….. > > > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > > > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into > a > > > big mess right now. > > > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > > doctor, > > > and #3 telling the guys at work who wanted me to work all weekend NO!, I > > > felt like I have regained some kind of control and with that some kind > of > > > hope. > > > Back to the endocrinology thing, the rapid way in which this came on has > > > given some things to bring up on my talk with my doc today. Maybe it’s a > > > thyroid or other glandular thing, I don’t know. But it reminds me of the > > > bouts I had previously mention in this post. > > > Bottom line, I want to go on Antidepressants ASAP. It was easy to get > off > > of > > > them and till then and the doc’s figure out what the hell is going on > with > > > me because even after a good nights sleep I can

Response:

Yes I know it takes anywhere from 2-6 weeks for these to kick in. But with the xanax I got a couple of good nights sleep and feel quite a bit better this morning. However, xanax is just a temporary Band-Aid for the bigger longer problem. I hope the Cymbalta works….. All in all, just going to the doctor and TRYING to do something has giving me some little ray of hope. I’ll be ok. Thanks. — Russ Visit Alaska @ http://www.tannersacre.com "Ken" wrote in message

news:1110620583.832313.46470@l41g2000cwc.googlegroups.com… – Hide quoted text — Show quoted text -> "Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe > Fatigue, > Depression, Anxiety, Sleeplessness." > Hi Russ … Sorry to hear of your problems. I’ve have had to deal with > depression and manic depresion for the last 20 years. A lot of what you > are experiencing may be from depression as much as the hep-c. Fatigue > is a big time symptom of depression, along with anxiety and > sleeplessness. Go get those antidepressants! Be aware though that not > all types work for all people … and it takes some time for them to > kick in. But if one type doesn’t work … try another type. Definitely > a trial and error process.Good Luck! > Ken

Response:

Hi Heppichik!! How are you feeling these days? I would like to know how your energy level is today now that your free of the dragon. Sure is good to hear from you. We were on the treatment together almost to the week. I’m glad you got your SVR and I hope life is good for you. Thanks — Russ Visit Alaska @ http://www.tannersacre.com "heppiechik" wrote in message

news:63DYd.655$Q85.164@fe02.lga… – Hide quoted text — Show quoted text -> Heeey Russ, > We’re here for you and ain’t nothing wrong with ad’s. I chose to stay on > Zoloft post tx and I’ll be 1 year post tx in May. Hang in there my friend, > you’re a survivor!! > hc > "Russ" wrote in message > news:11342q2lm305677@corp.supernews.com… > > Whew, tough week here for me folks, here goes my spiel…… > > Most of you know all this but for the newcomers I’ll just retell it all. > > Three years ago I was diagnosed with the Hep C. Before I found that out I > > went in for a full physical and my main complaint was "Why am I so tired > all > > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > > tests which were very normal and low) this and that. Right after that I > went > > to Seattle and was visiting with my old buddy from high school. He quietly > > tells me he as Hep C. I asked him how he found out how. "Well I went to > the > > doctor to see why I was so fucking tired all the time." > > Fuck > > I go home and call the doctor to check for that and bingo I have Hep c. > The > > usually up and down moody swings in trying to deal with that thought, but > I > > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > > "flu like symptoms" that would come and go. > > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > Pegasys > > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > the > > same time. My thyroid went Hyper about 4 months into the treatment. That > > was like being on speed, I was pretty nuts at the time. About month 5 the > > thyroid just quit and then I was cold, tired and very lethargic and tired. > I > > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > were > > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > Not > > too bad. But while in the last few months of treatment I would have these > > occasional episodes of extreme anxiety and sleeplessness. Those would last > a > > week or two and then just go away. On the week of my last shot I was > having > > one of those episodes and the BCLD was able to see my anxiety (my hands > were > > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > > but all those would do was make me have double vision, I would never feel > > tired and they didn’t work for sleep at all. Xanax did fine, I would at > > least "feel sleepy" and could get a good nights rest. I didn’t need them > all > > the time. Normally I never have problems sleeping. If I’m tired from work > I > > just conk out and wake up refreshed. > > Last December 1st I got the news that I had relapsed and my Viral Load was > > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > > last year about the first week of June.) I had so much energy I felt like > I > > was two feet off the ground. I felt wonderful and life was good. About mid > > September I started to feel a little bit tired, but chalked that up to the > > usual long hours of working construction. October last year the fatigue is > > really getting noticeable, AND I start to have the "flu like symptoms" > > coming on. In the back of my mind I’m thinking relapse, but trying to keep > a > > positive mind I try not to think that way. AT the same time my right > > shoulder just blows up and is very painful. I see the doc on that and do > PT > > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > > October I don’t feel very good at all. About mid November I go in for my > > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > > and I was starting to feel a bit better with the "flu". I wasn’t surprised > > Dec. 1st, my appointment with the BCLD that I had relapsed. > > Well that was a big let down and a bit depressing. December 7th, I take > off > > for a two month vacation and decide to "just put it behind me for now and > > have a good time". And I did. A month in the states, most of it in > > California in some nice sunny weather, then a wonderful month in South > > America. It was a good time. > > Then I’m back in the cold dark of Alaska and within 3 days of being home > > they call from work wanting me to come in. Well fuck me I thought, it’s a > > bit cold to be working but they said it’s in the shop and that would be > ok, > > just working 4-10 hour days. After the the first week I was outside in the > > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > > the Hep causing the fatigue and now the depression is coming on. > > I think, "In two more years I can take early retirement (enough to live > on), > > but man can I handle this line of work??" More depression. Now I’m falling > > into a pretty dark hole here guys and gals. Depression is something I have > > lived with all my life. It’s in my family. My dad was severely depressed > and > > checked out when I was 7. My brother is severely depressed and is doing > > 10-15 in the pen for nearly killing his wife. > > I used to deal with depression with drugs and alcohol till I was in so > much > > trouble (late 1980’s) that I saw the light, went to anger management and > AA > > and cleaned up. For many years I felt great, was very energetic and life > was > > good (till my ex-wife started drinking again). After my divorce in 1998 I > > felt pretty good and health was fine. > > But in the last 4-5 years there was this slow progression of fatigue but > > depression wasn’t a factor even then. > > Back to the last month and starting back at work the depression is working > > me hard. The last three weeks I start thinking about "eating the end of a > > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > that > > I get constant spam emails about getting over the internet and a long > > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > > Then just like that I’ll have a (few and far) day where I’m fine and > > laughing with the guys at work. > > Manic depression at work here. > > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > > to have problems sleeping. And all the time thinking about life being > tired > > all the time. More depression. > > The less I sleep, the edgier I get. The edgier I get the less I sleep. > The > > less I sleep the more depressed I get. > > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > if > > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > > atom bomb over Nagasaki. Not a good idea, there will be two emergency > > vehicles, one for the guy going to the hospital and one for me to the > > crowbar hotel. > > Yesterday I was so fucking tired I could hardly drive to work. It took all > > my inner strength to hang in there. > > And I realize, I can’t do this by myself and need help. I called the my > > primary Doctor for an appointment. I go in today at 4:20 > > Last night I’m talking to Kiak (not a poster here but she did the > treatment > > with me, she was type 2b and today is clear of the virus, bless her pea > > picking heart), I consider her someone not only my best friend but someone > I > > can confide in( and counting my friends here at ASH-C). I’m so tired I can > > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > night > > and FINALLY I fall into a long 11 hour sleep. > > I feel a bit better getting some sleep but the anxiety and tiredness is > > still there. I’m writing notes and thoughts to pass on to the doc. It goes > > something like this….. > > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > > big mess right now. > > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > doctor, > > and #3 telling the guys at work who wanted me to work all weekend NO!, I > > felt like I have regained some kind of control and with that some kind of > > hope. > > Back to the endocrinology thing, the rapid way in which this came on has > > given some things to bring up on my talk with my doc today. Maybe it’s a > > thyroid or other glandular thing, I don’t know. But it reminds me of the > > bouts I had previously mention in this post. > > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off > of > > them and till then and the doc’s figure out what the hell is going on with > > me because even after a good nights sleep I can feel the anxiety as I type > > this. This morning I talked to Kiak and she said she can hear it in my > > voice. Get my ship in some calmer seas and try to figure this out. > > I write this story because so many others go through the same thing. The > two > > biggest complaints I notice with people with Hep C is #1, their tired all > > the time and #2, joint aches. But Fatigue is a big factor with this. So > many > > doctors are too "liver orientated" about this virus. It affects all the > > organs. It affects the whole body. My liver was in ok shape and I didn’t > > need to do treatment, but I didn’t want to live with this debilitating > > fatigue anymore. > > My friend Kiak, she has had severe asthma for the last 6 years, she > has/had > > a cirrhotic liver, heart problems but has killed the HCV. I asked her this > > morning how she feels today versus 4 years ago

Response:

Depression and being tired is a nasty thing. Are you on meds for it? I was reading up on this Cymbalta anti-d the doc gave me, apparently it helps with certain types of pain. Now I am always aching in my joints and muscles, as I read about this new anti-d I thought that fixing some of the pain AND mellowing my moods out would be great. — Russ Visit Alaska @ http://www.tannersacre.com "Susie Quill" wrote in message

news:4232a51c$1_1@127.0.0.1… – Hide quoted text — Show quoted text -> Thanks for sharing your story. My biggest problem right now is still > fatigue. Finished treatment last September, but the fatigue never got > better. So went for sleep study in > November in the Philippines. Dx. with severe obstructive sleep apnea. > Finally got the c-pap machine a week ago, (out of pocket cost for the sleep > study, the plane fare, and the > machine and mask) and I was hoping for great changes. I’m still _______ > tired. > The machine isn’t comfortable to wear at night, but I’d put up with almost > anything for a good nights sleep. > Folkes are telling me it may just take time. My fibromyalgia pain is still > with me too. I’m tired of hurting. Was hoping it was from the sleep apnea > and the fibromyalgia would miraculously disappear too. No such luck yet, > but I still have some hope. Will go for my six month post treatment test > next week or so and I feel like it will be negative…but am still nervous > about it. > I think my depression lifted because I thought this machine would give me my > life back. So, I’m back to being depressed as well as fatigued and hurting. > I just want to feel rested. It has been ten years since I’ve felt rested. > Well, I know I’m not in this alone. > Maybe we can all get a handle on this. > Susie > "Russ" wrote in message > news:11342q2lm305677@corp.supernews.com… > > Whew, tough week here for me folks, here goes my spiel…… > > Most of you know all this but for the newcomers I’ll just retell it all. > > Three years ago I was diagnosed with the Hep C. Before I found that out I > > went in for a full physical and my main complaint was "Why am I so tired > > all > > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > > tests which were very normal and low) this and that. Right after that I > > went > > to Seattle and was visiting with my old buddy from high school. He quietly > > tells me he as Hep C. I asked him how he found out how. "Well I went to > > the > > doctor to see why I was so fucking tired all the time." > > Fuck > > I go home and call the doctor to check for that and bingo I have Hep c. > > The > > usually up and down moody swings in trying to deal with that thought, but > > I > > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > > "flu like symptoms" that would come and go. > > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > > Pegasys > > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > > the > > same time. My thyroid went Hyper about 4 months into the treatment. That > > was like being on speed, I was pretty nuts at the time. About month 5 the > > thyroid just quit and then I was cold, tired and very lethargic and tired. > > I > > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > > were > > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > > Not > > too bad. But while in the last few months of treatment I would have these > > occasional episodes of extreme anxiety and sleeplessness. Those would last > > a > > week or two and then just go away. On the week of my last shot I was > > having > > one of those episodes and the BCLD was able to see my anxiety (my hands > > were > > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > > but all those would do was make me have double vision, I would never feel > > tired and they didn’t work for sleep at all. Xanax did fine, I would at > > least "feel sleepy" and could get a good nights rest. I didn’t need them > > all > > the time. Normally I never have problems sleeping. If I’m tired from work > > I > > just conk out and wake up refreshed. > > Last December 1st I got the news that I had relapsed and my Viral Load was > > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > > last year about the first week of June.) I had so much energy I felt like > > I > > was two feet off the ground. I felt wonderful and life was good. About mid > > September I started to feel a little bit tired, but chalked that up to the > > usual long hours of working construction. October last year the fatigue is > > really getting noticeable, AND I start to have the "flu like symptoms" > > coming on. In the back of my mind I’m thinking relapse, but trying to keep > > a > > positive mind I try not to think that way. AT the same time my right > > shoulder just blows up and is very painful. I see the doc on that and do > > PT > > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > > October I don’t feel very good at all. About mid November I go in for my > > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > > and I was starting to feel a bit better with the "flu". I wasn’t surprised > > Dec. 1st, my appointment with the BCLD that I had relapsed. > > Well that was a big let down and a bit depressing. December 7th, I take > > off > > for a two month vacation and decide to "just put it behind me for now and > > have a good time". And I did. A month in the states, most of it in > > California in some nice sunny weather, then a wonderful month in South > > America. It was a good time. > > Then I’m back in the cold dark of Alaska and within 3 days of being home > > they call from work wanting me to come in. Well fuck me I thought, it’s a > > bit cold to be working but they said it’s in the shop and that would be > > ok, > > just working 4-10 hour days. After the the first week I was outside in the > > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > > the Hep causing the fatigue and now the depression is coming on. > > I think, "In two more years I can take early retirement (enough to live > > on), > > but man can I handle this line of work??" More depression. Now I’m falling > > into a pretty dark hole here guys and gals. Depression is something I have > > lived with all my life. It’s in my family. My dad was severely depressed > > and > > checked out when I was 7. My brother is severely depressed and is doing > > 10-15 in the pen for nearly killing his wife. > > I used to deal with depression with drugs and alcohol till I was in so > > much > > trouble (late 1980’s) that I saw the light, went to anger management and > > AA > > and cleaned up. For many years I felt great, was very energetic and life > > was > > good (till my ex-wife started drinking again). After my divorce in 1998 I > > felt pretty good and health was fine. > > But in the last 4-5 years there was this slow progression of fatigue but > > depression wasn’t a factor even then. > > Back to the last month and starting back at work the depression is working > > me hard. The last three weeks I start thinking about "eating the end of a > > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > > that > > I get constant spam emails about getting over the internet and a long > > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > > Then just like that I’ll have a (few and far) day where I’m fine and > > laughing with the guys at work. > > Manic depression at work here. > > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > > to have problems sleeping. And all the time thinking about life being > > tired > > all the time. More depression. > > The less I sleep, the edgier I get. The edgier I get the less I sleep. > > The > > less I sleep the more depressed I get. > > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > > if > > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > > atom bomb over Nagasaki. Not a good idea, there will be two emergency > > vehicles, one for the guy going to the hospital and one for me to the > > crowbar hotel. > > Yesterday I was so fucking tired I could hardly drive to work. It took all > > my inner strength to hang in there. > > And I realize, I can’t do this by myself and need help. I called the my > > primary Doctor for an appointment. I go in today at 4:20 > > Last night I’m talking to Kiak (not a poster here but she did the > > treatment > > with me, she was type 2b and today is clear of the virus, bless her pea > > picking heart), I consider her someone not only my best friend but someone > > I > > can confide in( and counting my friends here at ASH-C). I’m so tired I can > > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > > night > > and FINALLY I fall into a long 11 hour sleep. > > I feel a bit better getting some sleep but the anxiety and tiredness is > > still there. I’m writing notes and thoughts to pass on to the doc. It goes > > something like this….. > > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > > big mess right now. > > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > > doctor, > > and #3 telling the guys at work who wanted me to work all weekend NO!, I > > felt like I have regained some kind of control and with that some kind of > > hope. > > Back to the endocrinology thing, the rapid way in which this came on has > > given some things to bring up on my talk with my doc today. Maybe it’s a > > thyroid or

Response:

Heeey Russ, We’re here for you and ain’t nothing wrong with ad’s. I chose to stay on Zoloft post tx and I’ll be 1 year post tx in May. Hang in there my friend, you’re a survivor!! hc "Russ" wrote in message news:11342q2lm305677@corp.supernews.com… – Hide quoted text — Show quoted text -> Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. The > usually up and down moody swings in trying to deal with that thought, but I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last a > week or two and then just go away. On the week of my last shot I was having > one of those episodes and the BCLD was able to see my anxiety (my hands were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them all > the time. Normally I never have problems sleeping. If I’m tired from work I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so much > trouble (late 1980’s) that I saw the light, went to anger management and AA > and cleaned up. For many years I felt great, was very energetic and life was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So many > doctors are too "liver orientated" about this virus. It affects all the > organs. It affects the whole body. My liver was in ok shape and I didn’t > need to do treatment, but I didn’t want to live with this debilitating > fatigue anymore. > My friend Kiak, she has had severe asthma for the last 6 years, she has/had > a cirrhotic liver, heart problems but has killed the HCV. I asked her this > morning how she feels today versus 4 years ago when we met. She says her > asthma isn’t as bad, she has lost a lot of weight (and is looking pretty > damn hot boys!!!! woof!!) I told her I could tell she is healthier. > Bottom line, Hepatitis C isn’t just a "liver" disease, it’s a life disease > for some of us and is for me. > That’s all, I’ll let you all know what the doc and I come up with. > Thanks for listening, it’s good to get this off of my chest and it helps. I > don’t want to start dealing with depression by drinking and drugging like I > used to do in the old days! Today I’m clean, sober (no marijuana either) and > want to keep it that way. I need to get a handle on all of this. > later > — > Russ > Visit Alaska @ http://www.tannersacre.com

Response:

Thanks for the input on yourself Russ. Man it sure is tough sometimes. Doug "Russ" wrote in message news:11342q2lm305677@corp.supernews.com… – Hide quoted text — Show quoted text -> Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired > all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I > went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to > the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. > The > usually up and down moody swings in trying to deal with that thought, but > I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. > I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last > a > week or two and then just go away. On the week of my last shot I was > having > one of those episodes and the BCLD was able to see my anxiety (my hands > were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them > all > the time. Normally I never have problems sleeping. If I’m tired from work > I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like > I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep > a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do > PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take > off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be > ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live > on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed > and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so > much > trouble (late 1980’s) that I saw the light, went to anger management and > AA > and cleaned up. For many years I felt great, was very energetic and life > was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being > tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. > The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the > treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone > I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off > of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The > two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So > many > doctors are too "liver orientated" about this virus. It affects all the > organs. It affects the whole body. My liver was in ok shape and I didn’t > need to do treatment, but I didn’t want to live with this debilitating > fatigue anymore. > My friend Kiak, she has had severe asthma for the last 6 years, she > has/had > a cirrhotic liver, heart problems but has killed the HCV. I asked her this > morning how she feels today versus 4 years ago when we met. She says her > asthma isn’t as bad, she has lost a lot of weight (and is looking pretty > damn hot boys!!!! woof!!) I told her I could tell she is healthier. > Bottom line, Hepatitis C isn’t just a "liver" disease, it’s a life disease > for some of us and is for me. > That’s all, I’ll let you all know what the doc and I come up with. > Thanks for listening, it’s good to get this off of my chest and it helps. > I > don’t want to start dealing with depression by drinking and drugging like > I > used to do in the old days! Today I’m clean, sober (no marijuana either) > and > want to keep it that way. I need to get a handle on all of this. > later > — > Russ > Visit Alaska @ http://www.tannersacre.com

Response:

"Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, Depression, Anxiety, Sleeplessness." Hi Russ … Sorry to hear of your problems. I’ve have had to deal with depression and manic depresion for the last 20 years. A lot of what you are experiencing may be from depression as much as the hep-c. Fatigue is a big time symptom of depression, along with anxiety and sleeplessness. Go get those antidepressants! Be aware though that not all types work for all people … and it takes some time for them to kick in. But if one type doesn’t work … try another type. Definitely a trial and error process.Good Luck! Ken

Response:

Hey Geb, you get all the gum off your shoes yet? Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum

Response:

Thanks for the kind words, I guess sharing my story was a good idea! Hugs back at ya! — Russ Visit Alaska @ http://www.tannersacre.com "Thip" wrote in message

news:1110589888.0b3125bafc0dbd758e61f72a5c721425@teranews… – Hide quoted text — Show quoted text -> {{{{{{{{{{{Hug}}}}}}}}}} I wish I was there so I could give you the real > thing. > Thanks so much for putting all this down. It’s helped me realize I’m not > alone in dealing with this horrible fatigue and the depression (whish also > runs in my family, but not as bad as yours). My ever-lovin’ hubby blew his > brains out in the bedroom a couple years ago while I was at work and my > daughter was yakking to her best friend on the phone, and that left me with > some additional serious issues to handle, along with the even more serious > issues my daughter had. I’m not saying that to generate pity from anyone, > but to let you know how very, very much your post helped me to put my > problems back into perspective. You’re a great guy. Too bad they don’t > make more like you. > "Russ" wrote in message > news:11342q2lm305677@corp.supernews.com… > > Whew, tough week here for me folks, here goes my spiel…… > > Most of you know all this but for the newcomers I’ll just retell it all. > > Three years ago I was diagnosed with the Hep C. Before I found that out I > > went in for a full physical and my main complaint was "Why am I so tired > all > > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > > tests which were very normal and low) this and that. Right after that I > went > > to Seattle and was visiting with my old buddy from high school. He quietly > > tells me he as Hep C. I asked him how he found out how. "Well I went to > the > > doctor to see why I was so fucking tired all the time." > > Fuck > > I go home and call the doctor to check for that and bingo I have Hep c. > The > > usually up and down moody swings in trying to deal with that thought, but > I > > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > > "flu like symptoms" that would come and go. > > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > Pegasys > > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > the > > same time. My thyroid went Hyper about 4 months into the treatment. That > > was like being on speed, I was pretty nuts at the time. About month 5 the > > thyroid just quit and then I was cold, tired and very lethargic and tired. > I > > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > were > > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > Not > > too bad. But while in the last few months of treatment I would have these > > occasional episodes of extreme anxiety and sleeplessness. Those would last > a > > week or two and then just go away. On the week of my last shot I was > having > > one of those episodes and the BCLD was able to see my anxiety (my hands > were > > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > > but all those would do was make me have double vision, I would never feel > > tired and they didn’t work for sleep at all. Xanax did fine, I would at > > least "feel sleepy" and could get a good nights rest. I didn’t need them > all > > the time. Normally I never have problems sleeping. If I’m tired from work > I > > just conk out and wake up refreshed. > > Last December 1st I got the news that I had relapsed and my Viral Load was > > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > > last year about the first week of June.) I had so much energy I felt like > I > > was two feet off the ground. I felt wonderful and life was good. About mid > > September I started to feel a little bit tired, but chalked that up to the > > usual long hours of working construction. October last year the fatigue is > > really getting noticeable, AND I start to have the "flu like symptoms" > > coming on. In the back of my mind I’m thinking relapse, but trying to keep > a > > positive mind I try not to think that way. AT the same time my right > > shoulder just blows up and is very painful. I see the doc on that and do > PT > > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > > October I don’t feel very good at all. About mid November I go in for my > > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > > and I was starting to feel a bit better with the "flu". I wasn’t surprised > > Dec. 1st, my appointment with the BCLD that I had relapsed. > > Well that was a big let down and a bit depressing. December 7th, I take > off > > for a two month vacation and decide to "just put it behind me for now and > > have a good time". And I did. A month in the states, most of it in > > California in some nice sunny weather, then a wonderful month in South > > America. It was a good time. > > Then I’m back in the cold dark of Alaska and within 3 days of being home > > they call from work wanting me to come in. Well fuck me I thought, it’s a > > bit cold to be working but they said it’s in the shop and that would be > ok, > > just working 4-10 hour days. After the the first week I was outside in the > > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > > the Hep causing the fatigue and now the depression is coming on. > > I think, "In two more years I can take early retirement (enough to live > on), > > but man can I handle this line of work??" More depression. Now I’m falling > > into a pretty dark hole here guys and gals. Depression is something I have > > lived with all my life. It’s in my family. My dad was severely depressed > and > > checked out when I was 7. My brother is severely depressed and is doing > > 10-15 in the pen for nearly killing his wife. > > I used to deal with depression with drugs and alcohol till I was in so > much > > trouble (late 1980’s) that I saw the light, went to anger management and > AA > > and cleaned up. For many years I felt great, was very energetic and life > was > > good (till my ex-wife started drinking again). After my divorce in 1998 I > > felt pretty good and health was fine. > > But in the last 4-5 years there was this slow progression of fatigue but > > depression wasn’t a factor even then. > > Back to the last month and starting back at work the depression is working > > me hard. The last three weeks I start thinking about "eating the end of a > > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > that > > I get constant spam emails about getting over the internet and a long > > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > > Then just like that I’ll have a (few and far) day where I’m fine and > > laughing with the guys at work. > > Manic depression at work here. > > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > > to have problems sleeping. And all the time thinking about life being > tired > > all the time. More depression. > > The less I sleep, the edgier I get. The edgier I get the less I sleep. > The > > less I sleep the more depressed I get. > > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > if > > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > > atom bomb over Nagasaki. Not a good idea, there will be two emergency > > vehicles, one for the guy going to the hospital and one for me to the > > crowbar hotel. > > Yesterday I was so fucking tired I could hardly drive to work. It took all > > my inner strength to hang in there. > > And I realize, I can’t do this by myself and need help. I called the my > > primary Doctor for an appointment. I go in today at 4:20 > > Last night I’m talking to Kiak (not a poster here but she did the > treatment > > with me, she was type 2b and today is clear of the virus, bless her pea > > picking heart), I consider her someone not only my best friend but someone > I > > can confide in( and counting my friends here at ASH-C). I’m so tired I can > > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > night > > and FINALLY I fall into a long 11 hour sleep. > > I feel a bit better getting some sleep but the anxiety and tiredness is > > still there. I’m writing notes and thoughts to pass on to the doc. It goes > > something like this….. > > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > > big mess right now. > > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > doctor, > > and #3 telling the guys at work who wanted me to work all weekend NO!, I > > felt like I have regained some kind of control and with that some kind of > > hope. > > Back to the endocrinology thing, the rapid way in which this came on has > > given some things to bring up on my talk with my doc today. Maybe it’s a > > thyroid or other glandular thing, I don’t know. But it reminds me of the > > bouts I had previously mention in this post. > > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off > of > > them and till then and the doc’s figure out what the hell is going on with > > me because even after a good nights sleep I can feel the anxiety as I type > > this. This morning I talked to Kiak and she said she can hear it in my > > voice. Get my ship in some calmer seas and try to figure this out. > > I write this story because so many others go through the same thing. The > two > > biggest complaints I notice with people with Hep C is #1, their tired all > > the time and #2, joint aches. But Fatigue is a big factor with this. So > many > > doctors are too "liver orientated" about this

Response:

Thanks for sharing your story. My biggest problem right now is still fatigue. Finished treatment last September, but the fatigue never got better. So went for sleep study in November in the Philippines. Dx. with severe obstructive sleep apnea. Finally got the c-pap machine a week ago, (out of pocket cost for the sleep study, the plane fare, and the machine and mask) and I was hoping for great changes. I’m still _______ tired. The machine isn’t comfortable to wear at night, but I’d put up with almost anything for a good nights sleep. Folkes are telling me it may just take time. My fibromyalgia pain is still with me too. I’m tired of hurting. Was hoping it was from the sleep apnea and the fibromyalgia would miraculously disappear too. No such luck yet, but I still have some hope. Will go for my six month post treatment test next week or so and I feel like it will be negative…but am still nervous about it. I think my depression lifted because I thought this machine would give me my life back. So, I’m back to being depressed as well as fatigued and hurting. I just want to feel rested. It has been ten years since I’ve felt rested. Well, I know I’m not in this alone. Maybe we can all get a handle on this. Susie "Russ" wrote in message news:11342q2lm305677@corp.supernews.com… – Hide quoted text — Show quoted text -> Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired > all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I > went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to > the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. > The > usually up and down moody swings in trying to deal with that thought, but > I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day > the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. > I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They > were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. > Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last > a > week or two and then just go away. On the week of my last shot I was > having > one of those episodes and the BCLD was able to see my anxiety (my hands > were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them > all > the time. Normally I never have problems sleeping. If I’m tired from work > I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like > I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep > a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do > PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take > off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be > ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live > on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed > and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so > much > trouble (late 1980’s) that I saw the light, went to anger management and > AA > and cleaned up. For many years I felt great, was very energetic and life > was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax > that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being > tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. > The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours > if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the > treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone > I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last > night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off > of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The > two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So > many > doctors are too "liver orientated" about this virus. It affects all the > organs. It

Response:

Hi Thip, How are you doing? I’m trying to forget the battle but it’s not so easy. As I type memories of you and all the support you gave in the darkest hours are flooding in. You, for sure, gave me a swift kick in the stomp when I needed it most. Say hi to the goats! Baaaaaaaaaaaaaah!!! Geb

Response:

HI Geb, long time dude!!! Where you been? Well like the saying goes, "No matter where you go, there you are!". I’ll deal with this here for now. Read my next post and I’ll tell what the doc says. thanks — Russ Visit Alaska @ http://www.tannersacre.com "Geb Bixer" wrote in message

news:1110585674.762854.80220@o13g2000cwo.googlegroups.com… – Hide quoted text — Show quoted text -> Hello Russ, > I can’t say I know how you feel; because, during my deepst darkest > moments on TX, it never as bad for me as it is for you right now. I > think you were on the right track when you took your two month > vacation. Perhaps, if you could engineer a way to permanently change > your environment, it might help. Extreme weather has a lot to do with > the way we feel. I was up in Maryland last week and I noticed the > expressions on allot of people’s faces as a cold front from Canada > wipped through the area. All hunched over and grimacing, they were > clearly stressed. > Summertime in Florida is the same way. It’s hotter than hell, the > mosquitoes and humidity are unbearable; throw in a couple of hurricanes > and presto! > The solution as I see it is to extricate. You have a good job and can > make a pile of money, but so what? If you are depressed and unhappy > what does it matter? Vancouver, from what my research indicates, looks > like a real nice place. The weather is pleasant and mild. Not only > that, it is within striking distance of Waterspider! That should be > fun. Fun just might be part of the solution. > I hope you feel better and before doing any thing drastic, consider > getting the flock outta Dodge. > Geb > Russ wrote: > > Whew, tough week here for me folks, here goes my spiel…… > > Most of you know all this but for the newcomers I’ll just retell it > all. > > Three years ago I was diagnosed with the Hep C. Before I found that > out I > > went in for a full physical and my main complaint was "Why am I so > tired all > > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver > function > > tests which were very normal and low) this and that. Right after that > I went > > to Seattle and was visiting with my old buddy from high school. He > quietly > > tells me he as Hep C. I asked him how he found out how. "Well I went > to the > > doctor to see why I was so fucking tired all the time." > > Fuck > > I go home and call the doctor to check for that and bingo I have Hep > c. The > > usually up and down moody swings in trying to deal with that thought, > but I > > got through it fairly fast. Meanwhile the usually fatigue and on/off > vague > > "flu like symptoms" that would come and go. > > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of > Pegasys > > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a > day the > > same time. My thyroid went Hyper about 4 months into the treatment. > That > > was like being on speed, I was pretty nuts at the time. About month 5 > the > > thyroid just quit and then I was cold, tired and very lethargic and > tired. I > > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. > They were > > as high as 149 (max is 5.5) but by the end of treatment was > 8.something. Not > > too bad. But while in the last few months of treatment I would have > these > > occasional episodes of extreme anxiety and sleeplessness. Those would > last a > > week or two and then just go away. On the week of my last shot I was > having > > one of those episodes and the BCLD was able to see my anxiety (my > hands were > > just shaking) and prescribed me some Xanax. I was taking Ambien for > sleep, > > but all those would do was make me have double vision, I would never > feel > > tired and they didn’t work for sleep at all. Xanax did fine, I would > at > > least "feel sleepy" and could get a good nights rest. I didn’t need > them all > > the time. Normally I never have problems sleeping. If I’m tired from > work I > > just conk out and wake up refreshed. > > Last December 1st I got the news that I had relapsed and my Viral > Load was > > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was > done > > last year about the first week of June.) I had so much energy I felt > like I > > was two feet off the ground. I felt wonderful and life was good. > About mid > > September I started to feel a little bit tired, but chalked that up > to the > > usual long hours of working construction. October last year the > fatigue is > > really getting noticeable, AND I start to have the "flu like > symptoms" > > coming on. In the back of my mind I’m thinking relapse, but trying to > keep a > > positive mind I try not to think that way. AT the same time my right > > shoulder just blows up and is very painful. I see the doc on that and > do PT > > , pain meds and a strong anti-inflammatory (Indocin). The whole month > of > > October I don’t feel very good at all. About mid November I go in for > my > > blood draw for my 6-month post PCR and CBC. My shoulder was feeling > better > > and I was starting to feel a bit better with the "flu". I wasn’t > surprised > > Dec. 1st, my appointment with the BCLD that I had relapsed. > > Well that was a big let down and a bit depressing. December 7th, I > take off > > for a two month vacation and decide to "just put it behind me for now > and > > have a good time". And I did. A month in the states, most of it in > > California in some nice sunny weather, then a wonderful month in > South > > America. It was a good time. > > Then I’m back in the cold dark of Alaska and within 3 days of being > home > > they call from work wanting me to come in. Well fuck me I thought, > it’s a > > bit cold to be working but they said it’s in the shop and that would > be ok, > > just working 4-10 hour days. After the the first week I was outside > in the > > cold (well below freezing!!!) working and it’s hard. The fatigue > factor is > > really getting to me. After just 4 10 hour days I’m just beat. I know > it’s > > the Hep causing the fatigue and now the depression is coming on. > > I think, "In two more years I can take early retirement (enough to > live on), > > but man can I handle this line of work??" More depression. Now I’m > falling > > into a pretty dark hole here guys and gals. Depression is something I > have > > lived with all my life. It’s in my family. My dad was severely > depressed and > > checked out when I was 7. My brother is severely depressed and is > doing > > 10-15 in the pen for nearly killing his wife. > > I used to deal with depression with drugs and alcohol till I was in > so much > > trouble (late 1980’s) that I saw the light, went to anger management > and AA > > and cleaned up. For many years I felt great, was very energetic and > life was > > good (till my ex-wife started drinking again). After my divorce in > 1998 I > > felt pretty good and health was fine. > > But in the last 4-5 years there was this slow progression of fatigue > but > > depression wasn’t a factor even then. > > Back to the last month and starting back at work the depression is > working > > me hard. The last three weeks I start thinking about "eating the end > of a > > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg > xanax that > > I get constant spam emails about getting over the internet and a long > > snowmachine ride to where no one would ever find me." Pretty morbid > eh??? > > Then just like that I’ll have a (few and far) day where I’m fine and > > laughing with the guys at work. > > Manic depression at work here. > > Two weeks ago, the anxiety is starting up, irritable, cranky, and > starting > > to have problems sleeping. And all the time thinking about life being > tired > > all the time. More depression. > > The less I sleep, the edgier I get. The edgier I get the less I > sleep. The > > less I sleep the more depressed I get. > > This last week as been a total fucked up mess. No sleep, maybe 2-3 > hours if > > I’m lucky. Anybody that looks at me wrong I feel like blowing up like > an > > atom bomb over Nagasaki. Not a good idea, there will be two emergency > > vehicles, one for the guy going to the hospital and one for me to the > > crowbar hotel. > > Yesterday I was so fucking tired I could hardly drive to work. It > took all > > my inner strength to hang in there. > > And I realize, I can’t do this by myself and need help. I called the > my > > primary Doctor for an appointment. I go in today at 4:20 > > Last night I’m talking to Kiak (not a poster here but she did the > treatment > > with me, she was type 2b and today is clear of the virus, bless her > pea > > picking heart), I consider her someone not only my best friend but > someone I > > can confide in( and counting my friends here at ASH-C). I’m so tired > I can > > hardly talk. Well she has Xanax and gave me two .5mg, I took them > last night > > and FINALLY I fall into a long 11 hour sleep. > > I feel a bit better getting some sleep but the anxiety and tiredness > is > > still there. I’m writing notes and thoughts to pass on to the doc. It > goes > > something like this….. > > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe > Fatigue, > > Depression, Anxiety, Sleeplessness. The whole thing has snowballed > into a > > big mess right now. > > By doing three things, #1 TAKING to a trusted friend, #2 Calling the > doctor, > > and #3 telling the guys at work who wanted me to work all weekend > NO!, I > > felt like I have regained some kind of control and with that some > kind of > > hope. > > Back to the endocrinology thing, the rapid way in which this came on > has > > given some things to bring up on my talk with my doc today. Maybe > it’s a > > thyroid or other glandular thing, I don’t know. But it reminds me of > the > > bouts I had previously mention in this post. > > Bottom line, I want to go on Antidepressants ASAP. It

Response:

Russ- Thanks for sharing your story. This part sounds alot like my story. I’ve struggled with addiction/alcoholism & depression myself. I’m glad you have such a good friend to talk to. For me writing my thoughts & feelings on paper is therapeutic….it get’s the shit out of my head and some how disarms itself. Take care and let us know what the doc says. This too shall pass Mark – Hide quoted text — Show quoted text -> Thanks for listening, it’s good to get this off of my chest and it helps. > I > don’t want to start dealing with depression by drinking and drugging like > I > used to do in the old days! Today I’m clean, sober (no marijuana either) > and > want to keep it that way. I need to get a handle on all of this. > later > — > Russ > Visit Alaska @ http://www.tannersacre.com

Response:

- Hide quoted text — Show quoted text -Russ wrote: > Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. The > usually up and down moody swings in trying to deal with that thought, but I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last a > week or two and then just go away. On the week of my last shot I was having > one of those episodes and the BCLD was able to see my anxiety (my hands were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them all > the time. Normally I never have problems sleeping. If I’m tired from work I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so much > trouble (late 1980’s) that I saw the light, went to anger management and AA > and cleaned up. For many years I felt great, was very energetic and life was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So many > doctors are too "liver orientated" about this virus. It affects all the > organs. It affects the whole body. My liver was in ok shape and I didn’t > need to do treatment, but I didn’t want to live with this debilitating > fatigue anymore. > My friend Kiak, she has had severe asthma for the last 6 years, she has/had > a cirrhotic liver, heart problems but has killed the HCV. I asked her this > morning how she feels today versus 4 years ago when we met. She says her > asthma isn’t as bad, she has lost a lot of weight (and is looking pretty > damn hot boys!!!! woof!!) I told her I could tell she is healthier. > Bottom line, Hepatitis C isn’t just a "liver" disease, it’s a life disease > for some of us and is for me. > That’s all, I’ll let you all know what the doc and I come up with. > Thanks for listening, it’s good to get this off of my chest and it helps. I > don’t want to start dealing with depression by drinking and drugging like I > used to do in the old days! Today I’m clean, sober (no marijuana either) and > want to keep it that way. I need to get a handle on all of this. > later

Hang in there Russ, I know how you feel. This is the beginning of Spring Break for us so I’m hoping to rest enough to make it through the rest of the school year. After this last round of tx, I feel the fatigue more than I ever have before. I have to fight just to stay awake in class and find that I’m very irritable with all of my students and don’t try very hard to hide … read more »

Response:

Thanks for the post, Russ. It indeed sounds like you’re on the road to working things out. Let us know how your appt went this afternoon, bro. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum

Response:

{{{{{{{{{{{Hug}}}}}}}}}} I wish I was there so I could give you the real thing. Thanks so much for putting all this down. It’s helped me realize I’m not alone in dealing with this horrible fatigue and the depression (whish also runs in my family, but not as bad as yours). My ever-lovin’ hubby blew his brains out in the bedroom a couple years ago while I was at work and my daughter was yakking to her best friend on the phone, and that left me with some additional serious issues to handle, along with the even more serious issues my daughter had. I’m not saying that to generate pity from anyone, but to let you know how very, very much your post helped me to put my problems back into perspective. You’re a great guy. Too bad they don’t make more like you. "Russ" wrote in message news:11342q2lm305677@corp.supernews.com… – Hide quoted text — Show quoted text -> Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. The > usually up and down moody swings in trying to deal with that thought, but I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last a > week or two and then just go away. On the week of my last shot I was having > one of those episodes and the BCLD was able to see my anxiety (my hands were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them all > the time. Normally I never have problems sleeping. If I’m tired from work I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so much > trouble (late 1980’s) that I saw the light, went to anger management and AA > and cleaned up. For many years I felt great, was very energetic and life was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So many > doctors are too "liver orientated" about this virus. It affects all the > organs. It affects the whole body. My liver was in ok shape and I didn’t > need to do treatment, but I didn’t want to live with this debilitating > fatigue anymore. > My friend Kiak, she has had severe asthma for the last 6 years, she has/had > a cirrhotic liver, heart problems but has killed the HCV. I asked her this > morning how she feels today versus 4 years ago when we met. She says her > asthma isn’t as bad, she has lost a lot of weight (and is looking pretty > damn hot boys!!!! woof!!) I told her I could tell she is healthier. > Bottom line, Hepatitis C isn’t just a "liver" disease, it’s a

Response:

GEB!!!!!!! You are so missed!!!! "Geb Bixer" wrote in message

news:1110585674.762854.80220@o13g2000cwo.googlegroups.com… – Hide quoted text — Show quoted text -> Hello Russ,

Response:

Hello Russ, I can’t say I know how you feel; because, during my deepst darkest moments on TX, it never as bad for me as it is for you right now. I think you were on the right track when you took your two month vacation. Perhaps, if you could engineer a way to permanently change your environment, it might help. Extreme weather has a lot to do with the way we feel. I was up in Maryland last week and I noticed the expressions on allot of people’s faces as a cold front from Canada wipped through the area. All hunched over and grimacing, they were clearly stressed. Summertime in Florida is the same way. It’s hotter than hell, the mosquitoes and humidity are unbearable; throw in a couple of hurricanes and presto! The solution as I see it is to extricate. You have a good job and can make a pile of money, but so what? If you are depressed and unhappy what does it matter? Vancouver, from what my research indicates, looks like a real nice place. The weather is pleasant and mild. Not only that, it is within striking distance of Waterspider! That should be fun. Fun just might be part of the solution. I hope you feel better and before doing any thing drastic, consider getting the flock outta Dodge. Geb – Hide quoted text — Show quoted text -Russ wrote: > Whew, tough week here for me folks, here goes my spiel…… > Most of you know all this but for the newcomers I’ll just retell it all. > Three years ago I was diagnosed with the Hep C. Before I found that out I > went in for a full physical and my main complaint was "Why am I so tired all > the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function > tests which were very normal and low) this and that. Right after that I went > to Seattle and was visiting with my old buddy from high school. He quietly > tells me he as Hep C. I asked him how he found out how. "Well I went to the > doctor to see why I was so fucking tired all the time." > Fuck > I go home and call the doctor to check for that and bingo I have Hep c. The > usually up and down moody swings in trying to deal with that thought, but I > got through it fairly fast. Meanwhile the usually fatigue and on/off vague > "flu like symptoms" that would come and go. > 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of Pegasys > once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day the > same time. My thyroid went Hyper about 4 months into the treatment. That > was like being on speed, I was pretty nuts at the time. About month 5 the > thyroid just quit and then I was cold, tired and very lethargic and tired. I > went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They were > as high as 149 (max is 5.5) but by the end of treatment was 8.something. Not > too bad. But while in the last few months of treatment I would have these > occasional episodes of extreme anxiety and sleeplessness. Those would last a > week or two and then just go away. On the week of my last shot I was having > one of those episodes and the BCLD was able to see my anxiety (my hands were > just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, > but all those would do was make me have double vision, I would never feel > tired and they didn’t work for sleep at all. Xanax did fine, I would at > least "feel sleepy" and could get a good nights rest. I didn’t need them all > the time. Normally I never have problems sleeping. If I’m tired from work I > just conk out and wake up refreshed. > Last December 1st I got the news that I had relapsed and my Viral Load was > over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done > last year about the first week of June.) I had so much energy I felt like I > was two feet off the ground. I felt wonderful and life was good. About mid > September I started to feel a little bit tired, but chalked that up to the > usual long hours of working construction. October last year the fatigue is > really getting noticeable, AND I start to have the "flu like symptoms" > coming on. In the back of my mind I’m thinking relapse, but trying to keep a > positive mind I try not to think that way. AT the same time my right > shoulder just blows up and is very painful. I see the doc on that and do PT > , pain meds and a strong anti-inflammatory (Indocin). The whole month of > October I don’t feel very good at all. About mid November I go in for my > blood draw for my 6-month post PCR and CBC. My shoulder was feeling better > and I was starting to feel a bit better with the "flu". I wasn’t surprised > Dec. 1st, my appointment with the BCLD that I had relapsed. > Well that was a big let down and a bit depressing. December 7th, I take off > for a two month vacation and decide to "just put it behind me for now and > have a good time". And I did. A month in the states, most of it in > California in some nice sunny weather, then a wonderful month in South > America. It was a good time. > Then I’m back in the cold dark of Alaska and within 3 days of being home > they call from work wanting me to come in. Well fuck me I thought, it’s a > bit cold to be working but they said it’s in the shop and that would be ok, > just working 4-10 hour days. After the the first week I was outside in the > cold (well below freezing!!!) working and it’s hard. The fatigue factor is > really getting to me. After just 4 10 hour days I’m just beat. I know it’s > the Hep causing the fatigue and now the depression is coming on. > I think, "In two more years I can take early retirement (enough to live on), > but man can I handle this line of work??" More depression. Now I’m falling > into a pretty dark hole here guys and gals. Depression is something I have > lived with all my life. It’s in my family. My dad was severely depressed and > checked out when I was 7. My brother is severely depressed and is doing > 10-15 in the pen for nearly killing his wife. > I used to deal with depression with drugs and alcohol till I was in so much > trouble (late 1980’s) that I saw the light, went to anger management and AA > and cleaned up. For many years I felt great, was very energetic and life was > good (till my ex-wife started drinking again). After my divorce in 1998 I > felt pretty good and health was fine. > But in the last 4-5 years there was this slow progression of fatigue but > depression wasn’t a factor even then. > Back to the last month and starting back at work the depression is working > me hard. The last three weeks I start thinking about "eating the end of a > shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax that > I get constant spam emails about getting over the internet and a long > snowmachine ride to where no one would ever find me." Pretty morbid eh??? > Then just like that I’ll have a (few and far) day where I’m fine and > laughing with the guys at work. > Manic depression at work here. > Two weeks ago, the anxiety is starting up, irritable, cranky, and starting > to have problems sleeping. And all the time thinking about life being tired > all the time. More depression. > The less I sleep, the edgier I get. The edgier I get the less I sleep. The > less I sleep the more depressed I get. > This last week as been a total fucked up mess. No sleep, maybe 2-3 hours if > I’m lucky. Anybody that looks at me wrong I feel like blowing up like an > atom bomb over Nagasaki. Not a good idea, there will be two emergency > vehicles, one for the guy going to the hospital and one for me to the > crowbar hotel. > Yesterday I was so fucking tired I could hardly drive to work. It took all > my inner strength to hang in there. > And I realize, I can’t do this by myself and need help. I called the my > primary Doctor for an appointment. I go in today at 4:20 > Last night I’m talking to Kiak (not a poster here but she did the treatment > with me, she was type 2b and today is clear of the virus, bless her pea > picking heart), I consider her someone not only my best friend but someone I > can confide in( and counting my friends here at ASH-C). I’m so tired I can > hardly talk. Well she has Xanax and gave me two .5mg, I took them last night > and FINALLY I fall into a long 11 hour sleep. > I feel a bit better getting some sleep but the anxiety and tiredness is > still there. I’m writing notes and thoughts to pass on to the doc. It goes > something like this….. > Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, > Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a > big mess right now. > By doing three things, #1 TAKING to a trusted friend, #2 Calling the doctor, > and #3 telling the guys at work who wanted me to work all weekend NO!, I > felt like I have regained some kind of control and with that some kind of > hope. > Back to the endocrinology thing, the rapid way in which this came on has > given some things to bring up on my talk with my doc today. Maybe it’s a > thyroid or other glandular thing, I don’t know. But it reminds me of the > bouts I had previously mention in this post. > Bottom line, I want to go on Antidepressants ASAP. It was easy to get off of > them and till then and the doc’s figure out what the hell is going on with > me because even after a good nights sleep I can feel the anxiety as I type > this. This morning I talked to Kiak and she said she can hear it in my > voice. Get my ship in some calmer seas and try to figure this out. > I write this story because so many others go through the same thing. The two > biggest complaints I notice with people with Hep C is #1, their tired all > the time and #2, joint aches. But Fatigue is a big factor with this. So many > doctors are too "liver orientated" about this virus. It affects all the > organs. It affects the whole body. My liver was in ok shape and I didn’t > need to do treatment, but I didn’t want to live with this debilitating > fatigue anymore. > My friend Kiak, she has had severe asthma for the last 6

Response:

Whew, tough week here for me folks, here goes my spiel…… Most of you know all this but for the newcomers I’ll just retell it all. Three years ago I was diagnosed with the Hep C. Before I found that out I went in for a full physical and my main complaint was "Why am I so tired all the time?". Full blood work, CBC, Thyroid, Diabetes, LFT’s (liver function tests which were very normal and low) this and that. Right after that I went to Seattle and was visiting with my old buddy from high school. He quietly tells me he as Hep C. I asked him how he found out how. "Well I went to the doctor to see why I was so fucking tired all the time." Fuck I go home and call the doctor to check for that and bingo I have Hep c. The usually up and down moody swings in trying to deal with that thought, but I got through it fairly fast. Meanwhile the usually fatigue and on/off vague "flu like symptoms" that would come and go. 1 1/2 years later I start the treatment, type 1a so it’s 48 weeks of Pegasys once a week and 1200mb Ribaviran a day. I also started Zoloft 50mg a day the same time. My thyroid went Hyper about 4 months into the treatment. That was like being on speed, I was pretty nuts at the time. About month 5 the thyroid just quit and then I was cold, tired and very lethargic and tired. I went on the Synthroid, 100 ug a day. Slowly my TSH levels dropped. They were as high as 149 (max is 5.5) but by the end of treatment was 8.something. Not too bad. But while in the last few months of treatment I would have these occasional episodes of extreme anxiety and sleeplessness. Those would last a week or two and then just go away. On the week of my last shot I was having one of those episodes and the BCLD was able to see my anxiety (my hands were just shaking) and prescribed me some Xanax. I was taking Ambien for sleep, but all those would do was make me have double vision, I would never feel tired and they didn’t work for sleep at all. Xanax did fine, I would at least "feel sleepy" and could get a good nights rest. I didn’t need them all the time. Normally I never have problems sleeping. If I’m tired from work I just conk out and wake up refreshed. Last December 1st I got the news that I had relapsed and my Viral Load was over 3 million UI/ML. After the chemo wore off (about 5 weeks, I was done last year about the first week of June.) I had so much energy I felt like I was two feet off the ground. I felt wonderful and life was good. About mid September I started to feel a little bit tired, but chalked that up to the usual long hours of working construction. October last year the fatigue is really getting noticeable, AND I start to have the "flu like symptoms" coming on. In the back of my mind I’m thinking relapse, but trying to keep a positive mind I try not to think that way. AT the same time my right shoulder just blows up and is very painful. I see the doc on that and do PT , pain meds and a strong anti-inflammatory (Indocin). The whole month of October I don’t feel very good at all. About mid November I go in for my blood draw for my 6-month post PCR and CBC. My shoulder was feeling better and I was starting to feel a bit better with the "flu". I wasn’t surprised Dec. 1st, my appointment with the BCLD that I had relapsed. Well that was a big let down and a bit depressing. December 7th, I take off for a two month vacation and decide to "just put it behind me for now and have a good time". And I did. A month in the states, most of it in California in some nice sunny weather, then a wonderful month in South America. It was a good time. Then I’m back in the cold dark of Alaska and within 3 days of being home they call from work wanting me to come in. Well fuck me I thought, it’s a bit cold to be working but they said it’s in the shop and that would be ok, just working 4-10 hour days. After the the first week I was outside in the cold (well below freezing!!!) working and it’s hard. The fatigue factor is really getting to me. After just 4 10 hour days I’m just beat. I know it’s the Hep causing the fatigue and now the depression is coming on. I think, "In two more years I can take early retirement (enough to live on), but man can I handle this line of work??" More depression. Now I’m falling into a pretty dark hole here guys and gals. Depression is something I have lived with all my life. It’s in my family. My dad was severely depressed and checked out when I was 7. My brother is severely depressed and is doing 10-15 in the pen for nearly killing his wife. I used to deal with depression with drugs and alcohol till I was in so much trouble (late 1980’s) that I saw the light, went to anger management and AA and cleaned up. For many years I felt great, was very energetic and life was good (till my ex-wife started drinking again). After my divorce in 1998 I felt pretty good and health was fine. But in the last 4-5 years there was this slow progression of fatigue but depression wasn’t a factor even then. Back to the last month and starting back at work the depression is working me hard. The last three weeks I start thinking about "eating the end of a shotgun". Then I think, "Nawwww, too messy. Maybe 90 of those 2mg xanax that I get constant spam emails about getting over the internet and a long snowmachine ride to where no one would ever find me." Pretty morbid eh??? Then just like that I’ll have a (few and far) day where I’m fine and laughing with the guys at work. Manic depression at work here. Two weeks ago, the anxiety is starting up, irritable, cranky, and starting to have problems sleeping. And all the time thinking about life being tired all the time. More depression. The less I sleep, the edgier I get. The edgier I get the less I sleep. The less I sleep the more depressed I get. This last week as been a total fucked up mess. No sleep, maybe 2-3 hours if I’m lucky. Anybody that looks at me wrong I feel like blowing up like an atom bomb over Nagasaki. Not a good idea, there will be two emergency vehicles, one for the guy going to the hospital and one for me to the crowbar hotel. Yesterday I was so fucking tired I could hardly drive to work. It took all my inner strength to hang in there. And I realize, I can’t do this by myself and need help. I called the my primary Doctor for an appointment. I go in today at 4:20 Last night I’m talking to Kiak (not a poster here but she did the treatment with me, she was type 2b and today is clear of the virus, bless her pea picking heart), I consider her someone not only my best friend but someone I can confide in( and counting my friends here at ASH-C). I’m so tired I can hardly talk. Well she has Xanax and gave me two .5mg, I took them last night and FINALLY I fall into a long 11 hour sleep. I feel a bit better getting some sleep but the anxiety and tiredness is still there. I’m writing notes and thoughts to pass on to the doc. It goes something like this….. Hep c > Fatigue> Depression > Anxiety > Sleeplessness > Severe Fatigue, Depression, Anxiety, Sleeplessness. The whole thing has snowballed into a big mess right now. By doing three things, #1 TAKING to a trusted friend, #2 Calling the doctor, and #3 telling the guys at work who wanted me to work all weekend NO!, I felt like I have regained some kind of control and with that some kind of hope. Back to the endocrinology thing, the rapid way in which this came on has given some things to bring up on my talk with my doc today. Maybe it’s a thyroid or other glandular thing, I don’t know. But it reminds me of the bouts I had previously mention in this post. Bottom line, I want to go on Antidepressants ASAP. It was easy to get off of them and till then and the doc’s figure out what the hell is going on with me because even after a good nights sleep I can feel the anxiety as I type this. This morning I talked to Kiak and she said she can hear it in my voice. Get my ship in some calmer seas and try to figure this out. I write this story because so many others go through the same thing. The two biggest complaints I notice with people with Hep C is #1, their tired all the time and #2, joint aches. But Fatigue is a big factor with this. So many doctors are too "liver orientated" about this virus. It affects all the organs. It affects the whole body. My liver was in ok shape and I didn’t need to do treatment, but I didn’t want to live with this debilitating fatigue anymore. My friend Kiak, she has had severe asthma for the last 6 years, she has/had a cirrhotic liver, heart problems but has killed the HCV. I asked her this morning how she feels today versus 4 years ago when we met. She says her asthma isn’t as bad, she has lost a lot of weight (and is looking pretty damn hot boys!!!! woof!!) I told her I could tell she is healthier. Bottom line, Hepatitis C isn’t just a "liver" disease, it’s a life disease for some of us and is for me. That’s all, I’ll let you all know what the doc and I come up with. Thanks for listening, it’s good to get this off of my chest and it helps. I don’t want to start dealing with depression by drinking and drugging like I used to do in the old days! Today I’m clean, sober (no marijuana either) and want to keep it that way. I need to get a handle on all of this. later — Russ Visit Alaska @ http://www.tannersacre.com

Response:

Post Treatment

admin — Tue, 18 Jan 2005 00:00:00 +0000

Question:

Glad to here the good news Susie Sipan. Let me know the next time you go to the Philippines. Maybe I can meet you in Cebu. hehe Hey thank kind of news makes us all feel better! Good to hear from you!!!!!!!!!!!!!!!!! buster "Susie Quill" wrote in message

news:41ece2a6$1_1@127.0.0.1… – Hide quoted text — Show quoted text -> My last shot was in September. It has been a few months > now and I’ve noticed some changes in my mental attitude. > For the first time in years, chronic depression has lifted and > I’m almost always so ridiculously happy over nothing. > (Actually, I like the feeling, but it is taking some getting > used to and I feel a little sheepish about my total pleasure > in life in general) > Has their been any information out on HCV actually causing depression, > not from the sickness itself, but from > the action of the HCV on mental state or the nervous system? Hope this > is making sense. I just don’t see any other reason for me to have done > such a complete 180 after so many years of chronic depression. I think > the depression dated back from before I contracted HCV actually. > Hoping for a sustained SVR for everyone here. My next > test is in March and I’m feeling ridiculously optimistic > about it. > Susie > P.S. I still love lysol commercials where you can hear > the bugs dying in pain. : ) > I have a question for those of you that have been post treatment for a > while.

Response:

"ghibeluno" wrote in message

news:354gapF4it4f2U1@individual.net… – Hide quoted text — Show quoted text -> Susie Quill wrote: >> My last shot was in September. It has been a few months >> now and I’ve noticed some changes in my mental attitude. >> For the first time in years, chronic depression has lifted and >> I’m almost always so ridiculously happy over nothing. >> (Actually, I like the feeling, but it is taking some getting >> used to and I feel a little sheepish about my total pleasure >> in life in general) > Couldn’t it be that the fact you’ve gone thru a treatment which is known > to be not the easiest thing in the world makes you feel good, optimistic > and "born-again"? > I do wish you the best for your next to come check-point. > cheers, > jeeb.

Hi Jeeb! I suppose that is possible, but I’d been chronically depressed for so many years, that I don’t think I knew what it was like to not be depressed. It just seemed strange that it would lift after all this time without me doing anything differently. Not a complaint mind you, it is just puzzling. : ) Thanks, Susie —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—

Response:

Hi John! Yes, we have a volcanic ash warning here or some such thing. The wind is blowing our way from the island that is having the volcanic erutions. I seem to have a find dust all over my car, but generally it isn’t noticeable. Of course, I’m not outdoors much. I think the main problem is for people that have asthma problems. I was concerned about the tropical storm warning that we had a few days. Really worried that it would turn in to a typhoon. Started at Chuuk I think, and they say that they always hit us directly when it starts their. I’m really sick of typhoons. I want to live in-land when I retire. : ) I’m not feeling stronger yet, but I really think it is because of this dx. of severe obstructive sleep apnea. I’m still having trouble getting the right equipment here. I had a machine rented, but they only gave me a medium mask and it was too big for my face. They get their stuff from Guam and they flat refused to order me a small mask, because they have never had an order for a small mask before!! The local island population in Guam and Saipan is Chamoro and they are a big boned people with big noses and it was beyond their comprehension to belive, sight unseen, that I would need anything smaller than a medium. I guess I have a small European nose and guess they have never had a patient with one before. It is funny, but I’m too tired to laugh very much. Great that you found that shampoo. I have all kinds of new hair growing in. Even my beautician comments on it every time I go in. It is a relief to get up in the morning and not leave a bunch of hair on the pillow, or having it come out in my hand when I shampoo. Well I’m cheering you on. I knew you could hang in here. I’m like you, no family around, and it always helped so much to have people I could talk with that understood. When does the cast come off? I had given my husband a t-shirt once that said, "Help, I’ve dropped my beer and I can’t get up." I know it doesn’t exactly apply to you, but wish I could find one for you. : ) I hope this message gets thru, most of mine don’t seem to anymore. Take care, Susie "Red Dwarf" wrote in message

news:VO8Hd.64565$nP1.63716@twister.socal.rr.com… – Hide quoted text — Show quoted text -> Hi SusieQ, Glad to hear that you are recovering nicely.Are you in fact > feeling stronger? That for me would be a great relief. That is, after > going thru all this shit, I would hope to feel strong. I heard that there > is some sort of warning for the people of Saipan. Volcanic ash or > something from a neighboring volcano. Do you take ant-depressants? Just > wondering. I hope all goes well for you kiddo, I mean that in all > sincerity.Tomorrow I take 25/48, more than halfway there. Perhaps someday > I may be able to enjoy my life again. That thought is about all that keeps > me going on, and on, and on.Who knows, perhaps I may even enjoy Hawaii, > Finally I found that Nioxin shampoo and conditioner, and it is > expensive, but it seems to work well. It is for people with thinning hair, > and scalp problems. It especially seems to help those on this A/V TX to > have healthy hair again. There was this salon having a sidewalk sale at > the Ala Moana Mall, and I happened to see it, and was at 1/2 price. I got > lucky. I have tried to find this stuff at some pharmacies, and none of > them had it. Just salons.Incidentally they do not call it shampoo and > conditioner. Cleanser and scalp treatment. Good stuff! Glad to hear you’re > doing better SusieQ. > John > "Susie Quill" wrote in message > news:41ece2a6$1_1@127.0.0.1… >> My last shot was in September. It has been a few months >> now and I’ve noticed some changes in my mental attitude. >> For the first time in years, chronic depression has lifted and >> I’m almost always so ridiculously happy over nothing. >> (Actually, I like the feeling, but it is taking some getting >> used to and I feel a little sheepish about my total pleasure >> in life in general) >> Has their been any information out on HCV actually causing depression, >> not from the sickness itself, but from >> the action of the HCV on mental state or the nervous system? Hope this >> is making sense. I just don’t see any other reason for me to have done >> such a complete 180 after so many years of chronic depression. I think >> the depression dated back from before I contracted HCV actually. >> Hoping for a sustained SVR for everyone here. My next >> test is in March and I’m feeling ridiculously optimistic >> about it. >> Susie >> P.S. I still love lysol commercials where you can hear >> the bugs dying in pain. : ) >> I have a question for those of you that have been post treatment for a >> while.

—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—

Response:

12 to go. You are 2/3rd of the way their. I kept a calender and checked off another week after each week-end. Left notes on my calender to cheer myself on. Time marches on…inevitably and before long you will have that last shot. I’m in your corner, cheering you and everyone else on. Susie "Captain Backo" wrote in message

news:csj9on$kkf$1@reader11.wxs.nl… – Hide quoted text — Show quoted text -> Hallo SQ, > Keep it like this, as it is much much better than being > depressed. Good luck in March and SVR. > Thanks for the wishes. We are all doing our utmost. > I am in week 36 – only 12 to go. > CB > "Susie Quill" wrote in message > news:41ece2a6$1_1@127.0.0.1… >> My last shot was in September. It has been a few months >> now and I’ve noticed some changes in my mental attitude. >> For the first time in years, chronic depression has lifted and >> I’m almost always so ridiculously happy over nothing. >> (Actually, I like the feeling, but it is taking some getting >> used to and I feel a little sheepish about my total pleasure >> in life in general) >> Has their been any information out on HCV actually causing depression, > not >> from the sickness itself, but from >> the action of the HCV on mental state or the nervous system? Hope this > is >> making sense. I just don’t see any other reason for me to have done such > a >> complete 180 after so many years of chronic depression. I think the >> depression dated back from before I contracted HCV actually. >> Hoping for a sustained SVR for everyone here. My next >> test is in March and I’m feeling ridiculously optimistic >> about it. >> Susie >> P.S. I still love lysol commercials where you can hear >> the bugs dying in pain. : ) >> I have a question for those of you that have been post treatment for a >> while.

Response:

Great article Thomas. It makes sense to me. I still haven’t been able to get a machine for this severe obstructive sleep apnea that I was dx. with in November. However, even though I’m still tired, my attitude and outlook is generally so much better. With being this cheerful already, I can’t magine what I’d be like with the added benefit of getting a good nights sleep. Thanks for the article. Susie "Thomas Wagner" wrote in message

news:bhaqu0lu7v0cduus7hlhusnsoo8mh13iga@4ax.com… – Hide quoted text — Show quoted text -> On Tue, 18 Jan 2005 20:17:00 +1000, "Susie Quill" > wrote: >>Has their been any information out on HCV actually causing depression, >>not >>from the sickness itself, but from >>the action of the HCV on mental state or the nervous system? > Quite a bit. One cite: > Hepatitis C and cognitive impairment in a cohort of patients with mild > liver disease, Hepatology 2002 Feb;35(2):433-9 [...] > Patients with chronic hepatitis C virus (HCV) infection frequently > report fatigue, lassitude, depression, and a perceived inability to > function effectively. Several studies have shown that patients exhibit > low quality-of-life scores that are independent of disease severity. We > therefore considered whether HCV infection has a direct effect on the > central nervous system, resulting in cognitive and cerebral metabolite > abnormalities. Twenty-seven viremic patients with biopsy-proven mild > hepatitis due to HCV and 16 patients with cleared HCV were tested with a > computer-based cognitive assessment battery and also completed > depression, fatigue, and quality-of-life questionnaires. The > HCV-infected patients were impaired on more cognitive tasks than the > HCV-cleared group (mean [SD]: HCV-infected, 2.15 [1.56]; HCV-cleared, > 1.06 [1.24]; P =.02). A factor analysis showed impairments in power of > concentration and speed of working memory, independent of a history of > intravenous drug usage (IVDU), depression, fatigue, or symptom severity. > A subgroup of 17 HCV-infected patients also underwent cerebral proton > magnetic resonance spectroscopy (1H MRS). The choline/creatine ratio was > elevated in the basal ganglia and white matter in this group. Patients > who were impaired on 2 or more tasks in the battery had a higher mean > choline/creatine ratio compared with the unimpaired patients. In > conclusion, these preliminary results demonstrate cognitive impairment > that is unaccounted for by depression, fatigue, or a history of IVDU in > patients with histologically mild HCV infection. The findings on MRS > suggest that a biological cause underlies this abnormality. > Thomas > — > To reach me, complete my last name in the address.

Response:

Hi Buster! I’ll meet you in Cebu as long as I have a few days to spend in Makati to go shopping. I’ve never seen so many mals in my life as in Makati. : ) Hmmm! Wonder if all of Cebu is a red light district. Susie "buster" wrote in message

news:HGjHd.11115$sF5.8174@okepread06… – Hide quoted text — Show quoted text -> Glad to here the good news Susie Sipan. Let me know the next time you go > to the Philippines. Maybe I can meet you in Cebu. hehe > Hey thank kind of news makes us all feel better! > Good to hear from you!!!!!!!!!!!!!!!!! buster > "Susie Quill" wrote in message > news:41ece2a6$1_1@127.0.0.1… >> My last shot was in September. It has been a few months >> now and I’ve noticed some changes in my mental attitude. >> For the first time in years, chronic depression has lifted and >> I’m almost always so ridiculously happy over nothing. >> (Actually, I like the feeling, but it is taking some getting >> used to and I feel a little sheepish about my total pleasure >> in life in general) >> Has their been any information out on HCV actually causing depression, >> not from the sickness itself, but from >> the action of the HCV on mental state or the nervous system? Hope this >> is making sense. I just don’t see any other reason for me to have done >> such a complete 180 after so many years of chronic depression. I think >> the depression dated back from before I contracted HCV actually. >> Hoping for a sustained SVR for everyone here. My next >> test is in March and I’m feeling ridiculously optimistic >> about it. >> Susie >> P.S. I still love lysol commercials where you can hear >> the bugs dying in pain. : ) >> I have a question for those of you that have been post treatment for a >> while.

Response:

On Tue, 18 Jan 2005 15:36:33 GMT, "Cactus Jammies" – Hide quoted text — Show quoted text - wrote: >I have the same condition with skin rash as you CB, and almost the same >occurance point in tx. I do already have a pre exisiting psoriasis >condition and I thought it was a flare up (the begininngs of more psoriasis >events or lesions). This new rash does not ’scab up’ like my psoriasis >lesions do when they get out of control, but ususally a very sparing use of >the steroid keeps the patches to just angry looking and not painful or >scaley. I use a topical steroid cream (rx) on the Psoriasis, the steroid >also seems to have some effect reducing the itchy flare that the riba rash >(for lack of a better term) brings with it. >The label name on the P treatment is Topilene. Any scale that builds on the >riba rash is sloughed off almost in the same day as when I applied the >cream. >Cactus Jammies >———————– >"Captain Backo" wrote in message >news:csja7b$l14$1@reader11.wxs.nl… >> Hi John, >> I remember few weeks ago you were suffering from the >> skin rashes on your legs. At that time I was thinking, that >> that kind of problem is not a big deal. I was having small >> rashes which were seeming to disappear. Since than however >> things have gone worse. Now I have rashes on both my legs and >> on my hips and back. Very irritating and painful at times. >> Any idea. >> Hope your leg is giving you less problems. >> CB

I almost had to quit tx because of skin problems and would advise anyone having them not to take it lightly because untreated it can get worse. Topical steroids including non-prescription are one option and I’ve found moisturizing cream really helps keep it under controll. It is now 3 weeks after tx and my skin is still not back to normal, have dry eyes, and mild arthralgia. I was hoping once I stopped I would have almost immediate improvement. Hopefully soon. Don

Response:

I have the same condition with skin rash as you CB, and almost the same occurance point in tx. I do already have a pre exisiting psoriasis condition and I thought it was a flare up (the begininngs of more psoriasis events or lesions). This new rash does not ’scab up’ like my psoriasis lesions do when they get out of control, but ususally a very sparing use of the steroid keeps the patches to just angry looking and not painful or scaley. I use a topical steroid cream (rx) on the Psoriasis, the steroid also seems to have some effect reducing the itchy flare that the riba rash (for lack of a better term) brings with it. The label name on the P treatment is Topilene. Any scale that builds on the riba rash is sloughed off almost in the same day as when I applied the cream. Cactus Jammies ———————– "Captain Backo" wrote in message

news:csja7b$l14$1@reader11.wxs.nl… – Hide quoted text — Show quoted text -> Hi John, > I remember few weeks ago you were suffering from the > skin rashes on your legs. At that time I was thinking, that > that kind of problem is not a big deal. I was having small > rashes which were seeming to disappear. Since than however > things have gone worse. Now I have rashes on both my legs and > on my hips and back. Very irritating and painful at times. > Any idea. > Hope your leg is giving you less problems. > CB > "Red Dwarf" wrote in message > news:VO8Hd.64565$nP1.63716@twister.socal.rr.com… >> Hi SusieQ, Glad to hear that you are recovering nicely.Are you in fact >> feeling stronger? That for me would be a great relief. That is, after > going >> thru all this shit, I would hope to feel strong. I heard that there is > some >> sort of warning for the people of Saipan. Volcanic ash or something from >> a >> neighboring volcano. Do you take ant-depressants? Just wondering. I hope > all >> goes well for you kiddo, I mean that in all sincerity.Tomorrow I take > 25/48, >> more than halfway there. Perhaps someday I may be able to enjoy my life >> again. That thought is about all that keeps me going on, and on, and > on.Who >> knows, perhaps I may even enjoy Hawaii, Finally I found that Nioxin >> shampoo and conditioner, and it is expensive, but it seems to work well. > It >> is for people with thinning hair, and scalp problems. It especially seems > to >> help those on this A/V TX to have healthy hair again. There was this >> salon >> having a sidewalk sale at the Ala Moana Mall, and I happened to see it, > and >> was at 1/2 price. I got lucky. I have tried to find this stuff at some >> pharmacies, and none of them had it. Just salons.Incidentally they do not >> call it shampoo and conditioner. Cleanser and scalp treatment. Good >> stuff! >> Glad to hear you’re doing better SusieQ. >> John >> "Susie Quill" wrote in message >> news:41ece2a6$1_1@127.0.0.1… >> > My last shot was in September. It has been a few months >> > now and I’ve noticed some changes in my mental attitude. >> > For the first time in years, chronic depression has lifted and >> > I’m almost always so ridiculously happy over nothing. >> > (Actually, I like the feeling, but it is taking some getting >> > used to and I feel a little sheepish about my total pleasure >> > in life in general) >> > Has their been any information out on HCV actually causing depression, >> > not from the sickness itself, but from >> > the action of the HCV on mental state or the nervous system? Hope >> > this >> > is making sense. I just don’t see any other reason for me to have done >> > such a complete 180 after so many years of chronic depression. I think >> > the depression dated back from before I contracted HCV actually. >> > Hoping for a sustained SVR for everyone here. My next >> > test is in March and I’m feeling ridiculously optimistic >> > about it. >> > Susie >> > P.S. I still love lysol commercials where you can hear >> > the bugs dying in pain. : ) >> > I have a question for those of you that have been post treatment for a >> > while.

Response:

Hallo SQ, Keep it like this, as it is much much better than being depressed. Good luck in March and SVR. Thanks for the wishes. We are all doing our utmost. I am in week 36 – only 12 to go. CB "Susie Quill" wrote in message

news:41ece2a6$1_1@127.0.0.1… – Hide quoted text — Show quoted text -> My last shot was in September. It has been a few months > now and I’ve noticed some changes in my mental attitude. > For the first time in years, chronic depression has lifted and > I’m almost always so ridiculously happy over nothing. > (Actually, I like the feeling, but it is taking some getting > used to and I feel a little sheepish about my total pleasure > in life in general) > Has their been any information out on HCV actually causing depression, not > from the sickness itself, but from > the action of the HCV on mental state or the nervous system? Hope this is > making sense. I just don’t see any other reason for me to have done such a > complete 180 after so many years of chronic depression. I think the > depression dated back from before I contracted HCV actually. > Hoping for a sustained SVR for everyone here. My next > test is in March and I’m feeling ridiculously optimistic > about it. > Susie > P.S. I still love lysol commercials where you can hear > the bugs dying in pain. : ) > I have a question for those of you that have been post treatment for a > while.

Response:

Hi John, I remember few weeks ago you were suffering from the skin rashes on your legs. At that time I was thinking, that that kind of problem is not a big deal. I was having small rashes which were seeming to disappear. Since than however things have gone worse. Now I have rashes on both my legs and on my hips and back. Very irritating and painful at times. Any idea. Hope your leg is giving you less problems. CB "Red Dwarf" wrote in message

news:VO8Hd.64565$nP1.63716@twister.socal.rr.com… – Hide quoted text — Show quoted text -> Hi SusieQ, Glad to hear that you are recovering nicely.Are you in fact > feeling stronger? That for me would be a great relief. That is, after going > thru all this shit, I would hope to feel strong. I heard that there is some > sort of warning for the people of Saipan. Volcanic ash or something from a > neighboring volcano. Do you take ant-depressants? Just wondering. I hope all > goes well for you kiddo, I mean that in all sincerity.Tomorrow I take 25/48, > more than halfway there. Perhaps someday I may be able to enjoy my life > again. That thought is about all that keeps me going on, and on, and on.Who > knows, perhaps I may even enjoy Hawaii, Finally I found that Nioxin > shampoo and conditioner, and it is expensive, but it seems to work well. It > is for people with thinning hair, and scalp problems. It especially seems to > help those on this A/V TX to have healthy hair again. There was this salon > having a sidewalk sale at the Ala Moana Mall, and I happened to see it, and > was at 1/2 price. I got lucky. I have tried to find this stuff at some > pharmacies, and none of them had it. Just salons.Incidentally they do not > call it shampoo and conditioner. Cleanser and scalp treatment. Good stuff! > Glad to hear you’re doing better SusieQ. > John > "Susie Quill" wrote in message > news:41ece2a6$1_1@127.0.0.1… > > My last shot was in September. It has been a few months > > now and I’ve noticed some changes in my mental attitude. > > For the first time in years, chronic depression has lifted and > > I’m almost always so ridiculously happy over nothing. > > (Actually, I like the feeling, but it is taking some getting > > used to and I feel a little sheepish about my total pleasure > > in life in general) > > Has their been any information out on HCV actually causing depression, > > not from the sickness itself, but from > > the action of the HCV on mental state or the nervous system? Hope this > > is making sense. I just don’t see any other reason for me to have done > > such a complete 180 after so many years of chronic depression. I think > > the depression dated back from before I contracted HCV actually. > > Hoping for a sustained SVR for everyone here. My next > > test is in March and I’m feeling ridiculously optimistic > > about it. > > Susie > > P.S. I still love lysol commercials where you can hear > > the bugs dying in pain. : ) > > I have a question for those of you that have been post treatment for a > > while.

Response:

On Tue, 18 Jan 2005 20:17:00 +1000, "Susie Quill" wrote: >Has their been any information out on HCV actually causing depression, not >from the sickness itself, but from >the action of the HCV on mental state or the nervous system?

Quite a bit. One cite: Hepatitis C and cognitive impairment in a cohort of patients with mild liver disease, Hepatology 2002 Feb;35(2):433-9 [...] Patients with chronic hepatitis C virus (HCV) infection frequently report fatigue, lassitude, depression, and a perceived inability to function effectively. Several studies have shown that patients exhibit low quality-of-life scores that are independent of disease severity. We therefore considered whether HCV infection has a direct effect on the central nervous system, resulting in cognitive and cerebral metabolite abnormalities. Twenty-seven viremic patients with biopsy-proven mild hepatitis due to HCV and 16 patients with cleared HCV were tested with a computer-based cognitive assessment battery and also completed depression, fatigue, and quality-of-life questionnaires. The HCV-infected patients were impaired on more cognitive tasks than the HCV-cleared group (mean [SD]: HCV-infected, 2.15 [1.56]; HCV-cleared, 1.06 [1.24]; P =.02). A factor analysis showed impairments in power of concentration and speed of working memory, independent of a history of intravenous drug usage (IVDU), depression, fatigue, or symptom severity. A subgroup of 17 HCV-infected patients also underwent cerebral proton magnetic resonance spectroscopy (1H MRS). The choline/creatine ratio was elevated in the basal ganglia and white matter in this group. Patients who were impaired on 2 or more tasks in the battery had a higher mean choline/creatine ratio compared with the unimpaired patients. In conclusion, these preliminary results demonstrate cognitive impairment that is unaccounted for by depression, fatigue, or a history of IVDU in patients with histologically mild HCV infection. The findings on MRS suggest that a biological cause underlies this abnormality. Thomas — To reach me, complete my last name in the address.

Response:

My last shot was in September. It has been a few months now and I’ve noticed some changes in my mental attitude. For the first time in years, chronic depression has lifted and I’m almost always so ridiculously happy over nothing. (Actually, I like the feeling, but it is taking some getting used to and I feel a little sheepish about my total pleasure in life in general) Has their been any information out on HCV actually causing depression, not from the sickness itself, but from the action of the HCV on mental state or the nervous system? Hope this is making sense. I just don’t see any other reason for me to have done such a complete 180 after so many years of chronic depression. I think the depression dated back from before I contracted HCV actually. Hoping for a sustained SVR for everyone here. My next test is in March and I’m feeling ridiculously optimistic about it. Susie P.S. I still love lysol commercials where you can hear the bugs dying in pain. : ) I have a question for those of you that have been post treatment for a while.

Response:

Susie Quill wrote: > My last shot was in September. It has been a few months > now and I’ve noticed some changes in my mental attitude. > For the first time in years, chronic depression has lifted and > I’m almost always so ridiculously happy over nothing. > (Actually, I like the feeling, but it is taking some getting > used to and I feel a little sheepish about my total pleasure > in life in general)

Couldn’t it be that the fact you’ve gone thru a treatment which is known to be not the easiest thing in the world makes you feel good, optimistic and "born-again"? I do wish you the best for your next to come check-point. cheers, jeeb.

Response:

Hi SusieQ, Glad to hear that you are recovering nicely.Are you in fact feeling stronger? That for me would be a great relief. That is, after going thru all this shit, I would hope to feel strong. I heard that there is some sort of warning for the people of Saipan. Volcanic ash or something from a neighboring volcano. Do you take ant-depressants? Just wondering. I hope all goes well for you kiddo, I mean that in all sincerity.Tomorrow I take 25/48, more than halfway there. Perhaps someday I may be able to enjoy my life again. That thought is about all that keeps me going on, and on, and on.Who knows, perhaps I may even enjoy Hawaii, Finally I found that Nioxin shampoo and conditioner, and it is expensive, but it seems to work well. It is for people with thinning hair, and scalp problems. It especially seems to help those on this A/V TX to have healthy hair again. There was this salon having a sidewalk sale at the Ala Moana Mall, and I happened to see it, and was at 1/2 price. I got lucky. I have tried to find this stuff at some pharmacies, and none of them had it. Just salons.Incidentally they do not call it shampoo and conditioner. Cleanser and scalp treatment. Good stuff! Glad to hear you’re doing better SusieQ. John "Susie Quill" wrote in message

Response:

Need help for a 6yr old

admin — Sun, 02 Jan 2005 00:00:00 +0000

Question:

Gosh Jo, that must be really scary! I agree, I’d be seeking help from a neurologist. Good luck! Raleighgirl "jo-i" wrote in message

news:1104728111.795830.281880@c13g2000cwb.googlegroups.com… | I was directed here by a friend. If this is not the right place any | help would do. My son who is six, in the last 3 months has been un | wakable on 3 occasions during this time frame. | | The 1st time this happened, I called the ambulance, my son didn’t wake | up until we reached the hospital. I tried to wake him with a cold wet | cloth, we tried everything. | | It is like he is in a comma, he has absolutly no reactions. This really | scares me, so I took him to emergency room again, they performed a CT | Scan the doctor said everything looked about normal. | | I will take him to a neurologist as my next step. Someone mentioned | "Central Apnea" I will do my research. | All help is greatly appreciated. | | Thank you | Jo |

Response:

"jo-i" wrote: >I was directed here by a friend. If this is not the right place any >help would do. My son who is six, in the last 3 months has been un >wakable on 3 occasions during this time frame.

Nothing comes to mind, please let us know what you discover. >I will take him to a neurologist as my next step. Someone mentioned >"Central Apnea" I will do my research.

It’s not Central Apnea, that’s a condition where sleepers quit breathing with no physical obstructions. (Most of us have Obstructive Sleep Apnea, where our airways collapse during deep sleep.) >All help is greatly appreciated.

Try to get an appointment with a sleep specialist, he/she will be the most likely to send you in the right direction. Tom

Response:

- Hide quoted text — Show quoted text -Raleighgirl wrote: > Gosh Jo, that must be really scary! I agree, I’d be seeking help > from a neurologist. Good luck! > Raleighgirl > "jo-i" wrote in message > news:1104728111.795830.281880@c13g2000cwb.googlegroups.com… > | I was directed here by a friend. If this is not the right place > any > | help would do. My son who is six, in the last 3 months has > been un > | wakable on 3 occasions during this time frame. > | > | The 1st time this happened, I called the ambulance, my son > didn’t wake > | up until we reached the hospital. I tried to wake him with a > cold wet > | cloth, we tried everything. > | > | It is like he is in a comma, he has absolutly no reactions. > This really > | scares me, so I took him to emergency room again, they > performed a CT > | Scan the doctor said everything looked about normal. > | > | I will take him to a neurologist as my next step. Someone > mentioned > | "Central Apnea" I will do my research. > | All help is greatly appreciated. > | > | Thank you > | Jo > |

Jo, Does your child fall asleep fairly quick and go into that deep of sleep? I’m not sure, due to your child being so young, but it sounds as if maybe he has some sort of REM (dream sleep) disorder. That will certainly give the neurologist something to look at, hopefully. Good luck with this Thanks, Gian

Response:

On 2 Jan 2005 20:55:11 -0800, "jo-i" wrote: – Hide quoted text — Show quoted text ->I was directed here by a friend. If this is not the right place any >help would do. My son who is six, in the last 3 months has been un >wakable on 3 occasions during this time frame. >The 1st time this happened, I called the ambulance, my son didn’t wake >up until we reached the hospital. I tried to wake him with a cold wet >cloth, we tried everything. >It is like he is in a comma, he has absolutly no reactions. This really >scares me, so I took him to emergency room again, they performed a CT >Scan the doctor said everything looked about normal. >I will take him to a neurologist as my next step. Someone mentioned >"Central Apnea" I will do my research. >All help is greatly appreciated. >Thank you >Jo

Once had a 9 to 11 year old stepson. He was taking Ritalin on school days. He needed it, not a disruptive kid, just his mind and mouth would go 100 miles per hour without it, if you gave him an idea to ponder. He was a great problem solver as he could quickly think out alternative solutions to a problem..he couldn’t move on to the next problem,, still hung on the first one.. On the weekends he didn’t take his Ritalin at doctors request. When he would fall asleep, during road trips etc. he would be almost impossible to wake up. Breathing fine and all but would scare the heck out of me. His mother didn’t tell me about this! You could shake him, call his name etc.. no response. About the only outside stimuli that would wake him was tickling him and calling his name at the same time. Still could take 3 or 4 minutes till he opened his eyes for the first time. Doc said nothing to worry about. It was in response to being on Ritalin through the week then not having it. He was getting GOOD sleep when he was that deep. No nightmares etc. This was back before sleep studies were popular. Chuck

Response:

I was directed here by a friend. If this is not the right place any help would do. My son who is six, in the last 3 months has been un wakable on 3 occasions during this time frame. The 1st time this happened, I called the ambulance, my son didn’t wake up until we reached the hospital. I tried to wake him with a cold wet cloth, we tried everything. It is like he is in a comma, he has absolutly no reactions. This really scares me, so I took him to emergency room again, they performed a CT Scan the doctor said everything looked about normal. I will take him to a neurologist as my next step. Someone mentioned "Central Apnea" I will do my research. All help is greatly appreciated. Thank you Jo

Response:

Anyone have experience w/in-home sleep studies?

admin — Mon, 22 Nov 2004 00:00:00 +0000

Question:

Dan wrote: > SS-Well, call me cynical, but my personal opinion is they like the lab > tests because they can CHARGE a helluva lot more. Especially if they > have all the equipment sitting there. Even if > newer/smaller/faster/better approaches have come about (as they are > likely to do with testing that’s as computer/electronic in nature as > somnography) the drs who have a big investment in the older approach > are going to want to stick with it (even if all those 3 grand a pop > overnighters paid it off long ago… ) The US in general is very > "procedure oriented" when it comes to health care compared to other > countries. Interesting that despite all out "high tech", we rank 37th > globally in life expectancy, right between Costa Rica & Slovenia. > Obviously something’s wrong ;-( Anyway, do you recall if the > test/apparatus you used had a particular name?

It is true statistically. The return, statistically, may be much lower for a lab test relative to a home test. In the great majority of cases the additional expense is not going to be cost effective. For the majority an AutoPAP for a week at home will result in a perfectly good prescription or non-prescription. In a measurable number of cases the prescription (or non-prescription) may not be optimal, complete, or even a benefit. What is your preference? I pay for health insurance. If I have a (covered) choice between a comprehensive lab test or home test I’m going to opt for the lab test. I figure there will be trained personel conducting the test that can ensure the proper environment, equipment setup and operation, subjective observations, parameter tuning to focus more on certain areas that might warrant it, optional procedures, etc. Excluding the cost, I don’t think anyone can argue that a lab test will be more comprehensive, more thorough, and just plain "better". It all depends if you are looking at it from your personal perspective or statistically. I think that in the US the mindset is more of you get what you can afford whereas the rest of the world has more of a socialized health care outlook. -Quick

Response:

On Mon, 20 Dec 2004 16:59:12 -0500, Dan wrote: >Interesting that despite all out "high tech", we rank 37th >globally in life expectancy, right between Costa Rica & Slovenia. >Obviously something’s wrong ;-(

If you look, we do have a fairly high murder rate.

Response:

In my Kaiser area they use the "Star Dust" by Respironics "Dan" wrote in message

news:32p0h4F3qt9n8U2@individual.net… – Hide quoted text — Show quoted text -> Barb-Do you recall the name of the test or equipment you used? > Dan > Berkeley_Barb wrote: > > Hi Dan > > I am lucky enough to belong to Kaiser and they provided a test that was > > taken at home. I had to take it twice, because one thing didn’t work, > > but we finally got it done. It was painless and I feel, very good. If > > you have a HMO maybe they would do the test. > > Good luck > > Berkeley Barb > > Dan wrote: > >>I think I may have a sleep related problem, and had an initial > >>consultation with a sleep center in the area, which (not > > surprisingly) > >>recommended their in-center sleep study. Around $2-3,000, as I > > recall. > >> At the time (about a year ago) I did not have insurance (I do now) > > so > >>the cost put me off, but even more of a concern is the fact that I > > have > >>ZERO doubt I would not be able to sleep 2 winks in the setting they > >>showed me. I often have enough trouble falling asleep in a very nice > >>hotel room with my wife when we travel, let alone all wired up in a > > lab. > >> When I told them this & asked what they do in such cases, they > > replied > >>that after about 6 miserable hours of tossing & turning, they would > > call > >>the dr. at home & get authorization to give sleep medication. I’m no > >>expert, but it seems to me this might well skew the data. Also, to > > my > >>question "And if I DON’T sleep, do I still have to PAY???" They of > >>course replied "yes". It occurred to me that SOMEONE must have put > >>software on a laptop one could take home which would record at least > > the > >>majority of data required to come up with some findings, conclusions > >>which it would seem would be more representative than what you’d get > >>under the artificial & stressful atmosphere of a lab, especially if > >>you’re drugged. Even if they wanted to "observe" you, I’m sure this > >>could be done at home with modern digital video technology. And I’m > >>sure most of us have the brains to be able to stick on the requisite > >>test leads etc. as instructed by the doctor & staff while sitting on > > the > >>edge of our beds at home. I guess they figure it’d be harder to get > >>people to pony up 3 grand for this. I did a brief search & did find > > at > >>least one place that offers a home test, called "Sleep Quest", the > >>portion of their web site dealing with at-home testing is > >>http://store.yahoo.com/sleepquest/testsection.html The have a rig > > that > >>fits entirely on the patient’s left arm, and is said to "measure > >>peripheral arterial tone (PAT). (Peripheral arterial tone accurately > >>identifies respiratory events during sleep). In addition to the PAT > >>Signal, the Watch_PAT100 records oxygen saturation, pulse rate, > > movement > >>(actigraphy) and sleep/wake states". $495.00, including a report for > >>your doctor. Before I look any further, I thought I see if any of > > the > >>knowledgable people on this NG have had any experience with home > > testing > >>in general and "Sleep Quest" in particular. > >>TIA > >>Dan

Response:

- Hide quoted text — Show quoted text -Andy Hall wrote: > On 22 Dec 2004 22:41:07 GMT, jakewr…@aol.com (JakeWrite) wrote: >>>> I think I may have a sleep related problem, and had an initial >>>> consultation with a sleep center in the area, which (not >>>> surprisingly) recommended their in-center sleep study >> Yep, not surprising at all, since there is no substitute for a >> full-blown PSG test in an accredited sleep lab. > That depends on the condition for which the diagnosis is being made. > Portable testing is completely suitable for a lot of patients where > uncomplicated OSA is suspected especially if the patient is going to > have difficulty in an artificial lab environment. > This is not to say that there are not situations where a lab PSG does > not make the most sense, but it isn’t always necessary to throw the > whole gamut of science in where a simple diagnosis is being sought.

Right, but how do you know that until you have a full-blown PSG? Much of your argument is after the fact. "uncomplicated OSA is suspected". Even though it may be an informed suspicion it is still a suspicion. Even if a simple test confirms an uncomplicated suspicion it does not eliminate other disorders that may be present. What you propose is probably the most cost effective approach from a provider’s point of view. The majority of patients would probably not be referred for further diagnosis. Many of those would probably end up with completely adequate treatment. Others’ overall condition would be improved but not as much as it could be and additional disorders would go undiagnosed. We have/had a saying over here "Close enough for government work". -Quick

Response:

Dan wrote: >I completely agree! This dr made a big deal of how they give you a >continental breakfast in the morning, after which you hang around till >about 11 when they have you take a nap for another test. I’d be even >LESS likely to sleep during THAT portion!

Then you’ll probably pass the Multiple Sleep Latency Test (MSLT). >Jeez, I’m sounding like a real boozer here, in >fact I generally have maybe 2-3 glasses of red wine a night with dinner.

That shouldn’t affect anything either way, the alcohol should be gone after three hours. > I’ll definately keep the Ambien in mind.

Please do, it got me through two titrations. Tom – Hide quoted text — Show quoted text ->Dan >Tom Devlin wrote: >> Dan wrote: >>>Thanks Rob, I have used Ambien a time or 2, it does perform as >>>advertised. I know I’d need SOMETHING & I doubt they’d let me bring in >>>a couple bottles of 2 buck chuck >> I’ve always thought that someone who usually has a couple of drinks in >> the evening should be allowed to do the same at a sleep test. Isn’t >> the whole idea to re-create your normal sleeping environment? >> Anyway… My sleep doctors both prescribed Ambien when I mentioned >> that I had trouble sleeping in strange locations. Just make sure that >> the folks at the sleep lab know about the prescription, they get >> positively _frosty_ about "unapproved" sleep meds. >> Tom

Response:

On 22 Dec 2004 22:41:07 GMT, jakewr…@aol.com (JakeWrite) wrote: >>> I think I may have a sleep related problem, and had an initial >>> consultation with a sleep center in the area, which (not surprisingly) >>> recommended their in-center sleep study >Yep, not surprising at all, since there is no substitute for a full-blown PSG >test in an accredited sleep lab.

That depends on the condition for which the diagnosis is being made. Portable testing is completely suitable for a lot of patients where uncomplicated OSA is suspected especially if the patient is going to have difficulty in an artificial lab environment. This is not to say that there are not situations where a lab PSG does not make the most sense, but it isn’t always necessary to throw the whole gamut of science in where a simple diagnosis is being sought. >>to me that SOMEONE must have put >>> software on a laptop one could take home which would record at least the >>> majority of data required to come up with some findings, conclusions >>> which it would seem would be more representative than what you’d get >That would be nice, yes.

It’s perfectly possible and already in use. For example http://www.medcare.com/products/diagnostic/embletta/ >>And I’m >>> sure most of us have the brains to be able to stick on the requisite >>> test leads etc. as instructed by the doctor & staff while sitting on the >>> edge of our beds at home. >Probably not. The leads are placed in very specific areas, which may need to be >shaved down and then glued. It’s a pain in the ass (I speak as someone who’s >had four studies), and I’m sure I’d fluck it up if left to my own devices.

It depends on the instrumentation being used. There are various sensors that can be used for diagnosis of certain sleep disorders that do not require EEG electrodes etc. – Hide quoted text — Show quoted text ->> I guess they figure it’d be harder to get >>> people to pony up 3 grand for this. >Your cynicism is going to interfere with you getting help. Trust me on this >one. >> I did a brief search & did find at >>> least one place that offers a home test, called "Sleep Quest", the >>> portion of their web site dealing with at-home testing is >>> http://store.yahoo.com/sleepquest/testsection.html The have a rig that >>> fits entirely on the patient’s left arm, and is said to "measure >>> peripheral arterial tone (PAT). (Peripheral arterial tone accurately >>> identifies respiratory events during sleep). In addition to the PAT >>> Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement >>> (actigraphy) and sleep/wake states". $495.00, including a report for >>> your doctor. Before I look any further, I thought I see if any of the >>> knowledgable people on this NG have had any experience with home testing >>> in general and "Sleep Quest" in particular. >I took the Sleep Quest PAT test in late 2003 due to my dissatisfaction with my >sleep physician and the stuttered nature of my sleep during in-clinic PSGs. I >was hoping for a "cleaner" result. >The equipment was non-invasive, just as advertised. Two finger clips measure >the peripheral arterial tone and oxygen levels in your blood. >The biggest problem with PAT is that it’s a very simplistic, generalized >overview of sleep disorder. It did record 197 respiratory disturbances during >the night, so it supported the results of the PSG, but could not be nearly as >comprehensive.

It really depends on the diagnoses being sought and the instrumentation used. A few years ago, the typical home study machine was just a recording oximeter and not too much more. Now they measure respiratory parameters, movement, position etc. etc. with improvements all the time. This isn’t intended to replace a lab study, but is suitable for certain SDB diagnosis applications. >It cannot titrate you, give details regarding the length and severity of the >breathing cessations, record snoring events, record leg movement, record time >spent in various sleep states, or observe your body/habits during the night.

If an autotitrating machine is used, then titration isn’t necessary anyway. Most of the other factors you mention can be measured by portable equipment. >In other words: it’s like having tooth pain and having a dentist treat you >based on a superficial examination…no x-rays, no probing, no pictures, no >questions about pain/problems, etc. >My advice to you is to TRY having the PSG done, because it will provide the >greatest amount of information in the most professional manner possible. If you >are concerned about not being able to fall asleep, then sleep for only 4-6 >hours the evening before. Force yourself to get up early and perform your >regular duties. >Failing that, take on a labor-intensive job that takes up the afternoon. Do >something to provoke greater than usual fatigue that will likely override any >mental obstacles you have going in.

If a variety of sleep disorders are suspected by the doctor, then a PSG probably does make sense. If he suspects simple OSA, then there is no reason not to use a home study approach. If there is OSA, then that needs to be treated anyway. Then if there are other sleep disorders after that, they can be made subject to further tests if necessary. >Be relaxed in the knowledge that if you can’t sleep, you can always resort to >the PAT…though there’s still the matter of getting titrated if you indeed >have apnea.

This is not required if an autotitrating flow generator is used. >You should probably accept that an in-clinic evaluation is going to happen at >some point. Some outfits offer an in-home study, but you’re probably going to >be just as uncomfortable at home with a strange dude in the adjacent room as >you will be in the clinic.

Could be, but perhaps less clinical…… — .andy To email, substitute .nospam with .gl

Response:

Don’t recall. you could call the Clnical Monitoring Center (Cupertino, CA) at 408 523 3461. Tech’s name was Henry Luu.

Response:

>> I think I may have a sleep related problem, and had an initial >> consultation with a sleep center in the area, which (not surprisingly) >> recommended their in-center sleep study

Yep, not surprising at all, since there is no substitute for a full-blown PSG test in an accredited sleep lab. >> the cost put me off, but even more of a concern is the fact that I have >> ZERO doubt I would not be able to sleep 2 winks in the setting they >> showed me.

I can sympathize – my problem wasn’t so much the surroundings as the fact that I felt like I HAD to get to sleep, otherwise I’d never have a solution to my problem. And, as anyone knows, having anxiety about sleep is the best way to never get any. I didn’t sleep well, but I did sleep…enough for them to diagnose sleep apnea. (And that does not appear to be my only problem, but that’s another novel.) >> expert, but it seems to me this might well skew the data. Also, to my >> question "And if I DON’T sleep, do I still have to PAY???" They of >> course replied "yes".

Of course. The time and expense isn’t negated just because you didn’t sleep. If the findings weren’t sufficient, they should be able to schedule another test at no additional expense, though. >to me that SOMEONE must have put >> software on a laptop one could take home which would record at least the >> majority of data required to come up with some findings, conclusions >> which it would seem would be more representative than what you’d get

That would be nice, yes. >> under the artificial & stressful atmosphere of a lab, especially if >> you’re drugged. Even if they wanted to "observe" you, I’m sure this >> could be done at home with modern digital video technology. And I’m

It comes down to practicality. Theoretically, a surgeon COULD take out your spleen in your own bed, but it would come at great effort, expense, stress, etc. >And I’m >> sure most of us have the brains to be able to stick on the requisite >> test leads etc. as instructed by the doctor & staff while sitting on the >> edge of our beds at home.

Probably not. The leads are placed in very specific areas, which may need to be shaved down and then glued. It’s a pain in the ass (I speak as someone who’s had four studies), and I’m sure I’d fluck it up if left to my own devices. > I guess they figure it’d be harder to get >> people to pony up 3 grand for this.

Your cynicism is going to interfere with you getting help. Trust me on this one. > I did a brief search & did find at >> least one place that offers a home test, called "Sleep Quest", the >> portion of their web site dealing with at-home testing is >> http://store.yahoo.com/sleepquest/testsection.html The have a rig that >> fits entirely on the patient’s left arm, and is said to "measure >> peripheral arterial tone (PAT). (Peripheral arterial tone accurately >> identifies respiratory events during sleep). In addition to the PAT >> Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement >> (actigraphy) and sleep/wake states". $495.00, including a report for >> your doctor. Before I look any further, I thought I see if any of the >> knowledgable people on this NG have had any experience with home testing >> in general and "Sleep Quest" in particular.

I took the Sleep Quest PAT test in late 2003 due to my dissatisfaction with my sleep physician and the stuttered nature of my sleep during in-clinic PSGs. I was hoping for a "cleaner" result. The equipment was non-invasive, just as advertised. Two finger clips measure the peripheral arterial tone and oxygen levels in your blood. The biggest problem with PAT is that it’s a very simplistic, generalized overview of sleep disorder. It did record 197 respiratory disturbances during the night, so it supported the results of the PSG, but could not be nearly as comprehensive. It cannot titrate you, give details regarding the length and severity of the breathing cessations, record snoring events, record leg movement, record time spent in various sleep states, or observe your body/habits during the night. In other words: it’s like having tooth pain and having a dentist treat you based on a superficial examination…no x-rays, no probing, no pictures, no questions about pain/problems, etc. My advice to you is to TRY having the PSG done, because it will provide the greatest amount of information in the most professional manner possible. If you are concerned about not being able to fall asleep, then sleep for only 4-6 hours the evening before. Force yourself to get up early and perform your regular duties. Failing that, take on a labor-intensive job that takes up the afternoon. Do something to provoke greater than usual fatigue that will likely override any mental obstacles you have going in. Be relaxed in the knowledge that if you can’t sleep, you can always resort to the PAT…though there’s still the matter of getting titrated if you indeed have apnea. You should probably accept that an in-clinic evaluation is going to happen at some point. Some outfits offer an in-home study, but you’re probably going to be just as uncomfortable at home with a strange dude in the adjacent room as you will be in the clinic. Good luck.

Response:

Barb-Do you recall the name of the test or equipment you used? Dan – Hide quoted text — Show quoted text -Berkeley_Barb wrote: > Hi Dan > I am lucky enough to belong to Kaiser and they provided a test that was > taken at home. I had to take it twice, because one thing didn’t work, > but we finally got it done. It was painless and I feel, very good. If > you have a HMO maybe they would do the test. > Good luck > Berkeley Barb > Dan wrote: >>I think I may have a sleep related problem, and had an initial >>consultation with a sleep center in the area, which (not > surprisingly) >>recommended their in-center sleep study. Around $2-3,000, as I > recall. >> At the time (about a year ago) I did not have insurance (I do now) > so >>the cost put me off, but even more of a concern is the fact that I > have >>ZERO doubt I would not be able to sleep 2 winks in the setting they >>showed me. I often have enough trouble falling asleep in a very nice >>hotel room with my wife when we travel, let alone all wired up in a > lab. >> When I told them this & asked what they do in such cases, they > replied >>that after about 6 miserable hours of tossing & turning, they would > call >>the dr. at home & get authorization to give sleep medication. I’m no >>expert, but it seems to me this might well skew the data. Also, to > my >>question "And if I DON’T sleep, do I still have to PAY???" They of >>course replied "yes". It occurred to me that SOMEONE must have put >>software on a laptop one could take home which would record at least > the >>majority of data required to come up with some findings, conclusions >>which it would seem would be more representative than what you’d get >>under the artificial & stressful atmosphere of a lab, especially if >>you’re drugged. Even if they wanted to "observe" you, I’m sure this >>could be done at home with modern digital video technology. And I’m >>sure most of us have the brains to be able to stick on the requisite >>test leads etc. as instructed by the doctor & staff while sitting on > the >>edge of our beds at home. I guess they figure it’d be harder to get >>people to pony up 3 grand for this. I did a brief search & did find > at >>least one place that offers a home test, called "Sleep Quest", the >>portion of their web site dealing with at-home testing is >>http://store.yahoo.com/sleepquest/testsection.html The have a rig > that >>fits entirely on the patient’s left arm, and is said to "measure >>peripheral arterial tone (PAT). (Peripheral arterial tone accurately >>identifies respiratory events during sleep). In addition to the PAT >>Signal, the Watch_PAT100 records oxygen saturation, pulse rate, > movement >>(actigraphy) and sleep/wake states". $495.00, including a report for >>your doctor. Before I look any further, I thought I see if any of > the >>knowledgable people on this NG have had any experience with home > testing >>in general and "Sleep Quest" in particular. >>TIA >>Dan

Response:

I completely agree! This dr made a big deal of how they give you a continental breakfast in the morning, after which you hang around till about 11 when they have you take a nap for another test. I’d be even LESS likely to sleep during THAT portion! Screw the breakfast, how about an open bar!!! Jeez, I’m sounding like a real boozer here, in fact I generally have maybe 2-3 glasses of red wine a night with dinner. I’ll definately keep the Ambien in mind. Dan – Hide quoted text — Show quoted text -Tom Devlin wrote: > Dan wrote: >>Thanks Rob, I have used Ambien a time or 2, it does perform as >>advertised. I know I’d need SOMETHING & I doubt they’d let me bring in >>a couple bottles of 2 buck chuck > I’ve always thought that someone who usually has a couple of drinks in > the evening should be allowed to do the same at a sleep test. Isn’t > the whole idea to re-create your normal sleeping environment? > Anyway… My sleep doctors both prescribed Ambien when I mentioned > that I had trouble sleeping in strange locations. Just make sure that > the folks at the sleep lab know about the prescription, they get > positively _frosty_ about "unapproved" sleep meds. > Tom

Response:

SS-Well, call me cynical, but my personal opinion is they like the lab tests because they can CHARGE a helluva lot more. Especially if they have all the equipment sitting there. Even if newer/smaller/faster/better approaches have come about (as they are likely to do with testing that’s as computer/electronic in nature as somnography) the drs who have a big investment in the older approach are going to want to stick with it (even if all those 3 grand a pop overnighters paid it off long ago… ) The US in general is very "procedure oriented" when it comes to health care compared to other countries. Interesting that despite all out "high tech", we rank 37th globally in life expectancy, right between Costa Rica & Slovenia. Obviously something’s wrong ;-( Anyway, do you recall if the test/apparatus you used had a particular name? Thanks, Dan – Hide quoted text — Show quoted text -Sleepsearch wrote: > I was also lucky enough to have a test at home. I had to go and be > instructed by the polysomnographer about how to wire up the leads, but > then I took the small data collection and battery unit, along with the > leads, home. I had slender tube in my nose, a strap across the chest > to monitor heart beat, a stap across the abdomen for respiration, a > thing on my wrist to measure movement, a blood oxygen monitor in my > finger, and motion sensors on both legs. I took 1/2 valium and slept > fine. Then I had to bring the equipment back into the lab the next day > before the battery wore out. This equip could not only tell when I > fell asleep and woke up and how many apnea episodes I had, it could > tell my sleeping position! I can’t see why they’d need to have you in > a lab if they can tell all that from a relatively simple set of > equipment.

Response:

"Sleepsearch" wrote in message

news:1103504710.854943.73040@z14g2000cwz.googlegroups.com… > I was also lucky enough to have a test at home. I had to go and be > instructed by the polysomnographer about how to wire up the leads, but > then I took the small data collection and battery unit, along with the > leads, home. I had slender tube in my nose, a strap across the chest > to monitor heart beat, a stap across the abdomen for respiration, a > thing on my wrist to measure movement, a blood oxygen monitor in my > finger, and motion sensors on both legs. I took 1/2 valium and slept > fine. Then I had to bring the equipment back into the lab the next day > before the battery wore out. This equip could not only tell when I > fell asleep and woke up and how many apnea episodes I had, it could > tell my sleeping position! I can’t see why they’d need to have you in > a lab if they can tell all that from a relatively simple set of > equipment.

Doctors need Mauii condos?

Response:

Dan wrote: >Thanks Rob, I have used Ambien a time or 2, it does perform as >advertised. I know I’d need SOMETHING & I doubt they’d let me bring in >a couple bottles of 2 buck chuck

I’ve always thought that someone who usually has a couple of drinks in the evening should be allowed to do the same at a sleep test. Isn’t the whole idea to re-create your normal sleeping environment? Anyway… My sleep doctors both prescribed Ambien when I mentioned that I had trouble sleeping in strange locations. Just make sure that the folks at the sleep lab know about the prescription, they get positively _frosty_ about "unapproved" sleep meds. Tom

Response:

I was also lucky enough to have a test at home. I had to go and be instructed by the polysomnographer about how to wire up the leads, but then I took the small data collection and battery unit, along with the leads, home. I had slender tube in my nose, a strap across the chest to monitor heart beat, a stap across the abdomen for respiration, a thing on my wrist to measure movement, a blood oxygen monitor in my finger, and motion sensors on both legs. I took 1/2 valium and slept fine. Then I had to bring the equipment back into the lab the next day before the battery wore out. This equip could not only tell when I fell asleep and woke up and how many apnea episodes I had, it could tell my sleeping position! I can’t see why they’d need to have you in a lab if they can tell all that from a relatively simple set of equipment.

Response:

Hi Dan I am lucky enough to belong to Kaiser and they provided a test that was taken at home. I had to take it twice, because one thing didn’t work, but we finally got it done. It was painless and I feel, very good. If you have a HMO maybe they would do the test. Good luck Berkeley Barb – Hide quoted text — Show quoted text -Dan wrote: > I think I may have a sleep related problem, and had an initial > consultation with a sleep center in the area, which (not surprisingly) > recommended their in-center sleep study. Around $2-3,000, as I recall. > At the time (about a year ago) I did not have insurance (I do now) so > the cost put me off, but even more of a concern is the fact that I have > ZERO doubt I would not be able to sleep 2 winks in the setting they > showed me. I often have enough trouble falling asleep in a very nice > hotel room with my wife when we travel, let alone all wired up in a lab. > When I told them this & asked what they do in such cases, they replied > that after about 6 miserable hours of tossing & turning, they would call > the dr. at home & get authorization to give sleep medication. I’m no > expert, but it seems to me this might well skew the data. Also, to my > question "And if I DON’T sleep, do I still have to PAY???" They of > course replied "yes". It occurred to me that SOMEONE must have put > software on a laptop one could take home which would record at least the > majority of data required to come up with some findings, conclusions > which it would seem would be more representative than what you’d get > under the artificial & stressful atmosphere of a lab, especially if > you’re drugged. Even if they wanted to "observe" you, I’m sure this > could be done at home with modern digital video technology. And I’m > sure most of us have the brains to be able to stick on the requisite > test leads etc. as instructed by the doctor & staff while sitting on the > edge of our beds at home. I guess they figure it’d be harder to get > people to pony up 3 grand for this. I did a brief search & did find at > least one place that offers a home test, called "Sleep Quest", the > portion of their web site dealing with at-home testing is > http://store.yahoo.com/sleepquest/testsection.html The have a rig that > fits entirely on the patient’s left arm, and is said to "measure > peripheral arterial tone (PAT). (Peripheral arterial tone accurately > identifies respiratory events during sleep). In addition to the PAT > Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement > (actigraphy) and sleep/wake states". $495.00, including a report for > your doctor. Before I look any further, I thought I see if any of the > knowledgable people on this NG have had any experience with home testing > in general and "Sleep Quest" in particular. > TIA > Dan

Response:

Thanks Rob, I have used Ambien a time or 2, it does perform as advertised. I know I’d need SOMETHING & I doubt they’d let me bring in a couple bottles of 2 buck chuck The dr (who I didn’t really like on a number of levels, but I digress… ) said that when evaluating the data they’d just keep the drug’s presence in mind. My wife & I are in the process of moving so are sort of in limbo now, but when we finally settle I’ll check into this more aggressively. Dan – Hide quoted text — Show quoted text -rob wrote: > If you decide to go for a sleep lab test ask your doctor for a ambien > sleeping pill. It will put you asleep quickly and keep you asleep for > 2.5 hours. Maybe you will stay asleep. This will not effect the data > by a significant amount. Some of the HMO use at home sleep testing. > You might contact them to find out about the availablity of Home sleep > tests in your area.

Response:

I agree as well. If OSA is suspected and needs to be verified and quantified I believe a home evaluation would be adaquate in a great many cases and then available to a much larger number of people. The OP commented that a full sleep study in the lab would cost him $2000-$3000 and that you would think someone could have put this on a PC or something so that people could do this at home mentioning that the majority of us were smart enough to wire themselves up. It was only this that I disagree with. I don’t think the "smart" part (although still a factor) is as much of an issue as the physical/mechanical part. and then there is the monitoring afterwards. This all in the context of a full study. -Quick

Response:

- Hide quoted text — Show quoted text -Dan wrote: > I think I may have a sleep related problem, and had an initial > consultation with a sleep center in the area, which (not surprisingly) > recommended their in-center sleep study. Around $2-3,000, as I recall. > At the time (about a year ago) I did not have insurance (I do now) so > the cost put me off, but even more of a concern is the fact that I have > ZERO doubt I would not be able to sleep 2 winks in the setting they > showed me. I often have enough trouble falling asleep in a very nice > hotel room with my wife when we travel, let alone all wired up in a lab. > When I told them this & asked what they do in such cases, they replied > that after about 6 miserable hours of tossing & turning, they would call > the dr. at home & get authorization to give sleep medication. I’m no > expert, but it seems to me this might well skew the data. Also, to my > question "And if I DON’T sleep, do I still have to PAY???" They of > course replied "yes". It occurred to me that SOMEONE must have put > software on a laptop one could take home which would record at least the > majority of data required to come up with some findings, conclusions > which it would seem would be more representative than what you’d get > under the artificial & stressful atmosphere of a lab, especially if > you’re drugged. Even if they wanted to "observe" you, I’m sure this > could be done at home with modern digital video technology. And I’m > sure most of us have the brains to be able to stick on the requisite > test leads etc. as instructed by the doctor & staff while sitting on the > edge of our beds at home. I guess they figure it’d be harder to get > people to pony up 3 grand for this. I did a brief search & did find at > least one place that offers a home test, called "Sleep Quest", the > portion of their web site dealing with at-home testing is > http://store.yahoo.com/sleepquest/testsection.html The have a rig that > fits entirely on the patient’s left arm, and is said to "measure > peripheral arterial tone (PAT). (Peripheral arterial tone accurately > identifies respiratory events during sleep). In addition to the PAT > Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement > (actigraphy) and sleep/wake states". $495.00, including a report for > your doctor. Before I look any further, I thought I see if any of the > knowledgable people on this NG have had any experience with home testing > in general and "Sleep Quest" in particular. > TIA > Dan

If you decide to go for a sleep lab test ask your doctor for a ambien sleeping pill. It will put you asleep quickly and keep you asleep for 2.5 hours. Maybe you will stay asleep. This will not effect the data by a significant amount. Some of the HMO use at home sleep testing. You might contact them to find out about the availablity of Home sleep tests in your area.

Response:

> Actually, to get wired for a full sleep study, I’d be willing to bet > that greater than 90% would fail. and then who is going to be able > to tell you that lead #12 has come loose a couple of hours later… > > -Quick No doubt there are some for whom home testing is not a good approach, but I think with proper instruction the figure would be much lower, and a bit of reading I’ve done on MedLine and elsewhere since posting here supports this. According to one study done in Barcelona, the data acquisition failure rate for was 2.8% in the lab & 5.7% at home, an insignificant difference. A study at Brigham and Women’s hospital in Boston titled "Using a wrist-worn device based on peripheral arterial tonometry to diagnose obstructive sleep apnea: in-laboratory and ambulatory validation" tested the device used by the people I referred to in my OP and concluded "In a population of patients suspected of having obstructive sleep apnea, the Watch_PAT can quantify an Oxygen Desaturation Index that compares very well with Medicare criteria for defining respiratory events and an Respiratory Disturbance Index that compares favorably with Chicago criteria for defining respiratory events. The device can be used with a low failure rate for single use in the lab and home for self-administered testing". Another study carried out at the University on Minnesota this year concluded "median RDI was similar in the unattended home and attended laboratory setting with differences of small magnitude in some sleep parameters. Differences in RDI between settings resulted in a rate of disease misclassification that is similar to repeated studies in the same setting. Call me cynical, but I think as with all things in life, it pays to "follow the money". If the center I went to a year ago is typical (and it probably is), a lot of sleep doctors have a heavy investment in lab setups which they are inclined to utlize as much as possible. Dan – Hide quoted text — Show quoted text –

Response:

Andy-I agree. You have to wonder if a full-bore polysomnograph is actually required in each case, at the very least for initial screening. And as you said, there’s more than just cost & convenience at stake here; the current lab approach limits the number of patients able to access care. In the US we have often a tendency to throw a lot more costly technology at a health problem than is required, in the end increasing cost while lowering access. Dan – Hide quoted text — Show quoted text -Andy Hall wrote: > Two points here. > If OSA is strongly suspected by the doctor and/or partner/parent etc. > then a test just for that can be done without large numbers of sensors > and data being gathered. This is the purpose of simpler home testing > equipment – i,e, reaching more people at lower cost and with an > environment and test regime that does the job. It seems to me tha > tputting a small child in a hospital and wiring him up with a load of > electrodes isn’t ideal. > For more sophisticated testing, it is surprising how.smart equipment > has become. I recently went for an ECG at my GP surgery. THe > machine connected via 12 electrodes, IIRC and the doctor transposed > two of them by mistake. There was a message on the display that this > had happened and which two it was.

Response:

On Tue, 23 Nov 2004 10:22:43 -0800, "Quick" wrote: >I’d love to hear more about this. I have 3 boys – 6, 5, and 5. >I’m pretty sure one of the 5yr olds has OSA. I’m working up >to getting him tested. This would be great for kids. >Just looking at the thing on the web I wonder if it’s much more >than an advanced, recording, oximeter?

There’s a whole range of them now, starting from an oximeter and then adding various forms of movement detection, pulse transit time http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&… and so on. >> "Dan" wrote in message >[snip] >>> And I’m sure most of us have the brains to be able to >>> stick on the requisite test leads etc. as instructed by the doctor & >>> staff while sitting on the edge of our beds at home. >Actually, to get wired for a full sleep study, I’d be willing to bet >that greater than 90% would fail. and then who is going to be able >to tell you that lead #12 has come loose a couple of hours later…

Two points here. If OSA is strongly suspected by the doctor and/or partner/parent etc. then a test just for that can be done without large numbers of sensors and data being gathered. This is the purpose of simpler home testing equipment – i,e, reaching more people at lower cost and with an environment and test regime that does the job. It seems to me tha tputting a small child in a hospital and wiring him up with a load of electrodes isn’t ideal. For more sophisticated testing, it is surprising how.smart equipment has become. I recently went for an ECG at my GP surgery. THe machine connected via 12 electrodes, IIRC and the doctor transposed two of them by mistake. There was a message on the display that this had happened and which two it was. — .andy To email, substitute .nospam with .gl

Response:

I’d love to hear more about this. I have 3 boys – 6, 5, and 5. I’m pretty sure one of the 5yr olds has OSA. I’m working up to getting him tested. This would be great for kids. Just looking at the thing on the web I wonder if it’s much more than an advanced, recording, oximeter? > "Dan" wrote in message [snip] >> And I’m sure most of us have the brains to be able to >> stick on the requisite test leads etc. as instructed by the doctor & >> staff while sitting on the edge of our beds at home.

Actually, to get wired for a full sleep study, I’d be willing to bet that greater than 90% would fail. and then who is going to be able to tell you that lead #12 has come loose a couple of hours later… -Quick

Response:

On Mon, 22 Nov 2004 19:44:11 -0500, Dan wrote: >I think I may have a sleep related problem, and had an initial >consultation with a sleep center in the area, which (not surprisingly) >recommended their in-center sleep study. Around $2-3,000, as I recall. > At the time (about a year ago) I did not have insurance (I do now) so >the cost put me off, but even more of a concern is the fact that I have >ZERO doubt I would not be able to sleep 2 winks in the setting they >showed me.

A lot of insurance won’t pay for in-home sleep studies because they have trouble getting good data. Unless they’re somebody who uses a polysomnogram data acquisition module with a laptop/portable PC…. but that’s likely to be as expensive as in-center.

Response:

Some HMO’s will let you do home sleep study like the "Star Dust" by Respironics for example. Gee I did not know that sleep study will cost that much without insurance. "Dan" wrote in message

news:30ffeoF2smdf3U1@uni-berlin.de… – Hide quoted text — Show quoted text -> I think I may have a sleep related problem, and had an initial > consultation with a sleep center in the area, which (not surprisingly) > recommended their in-center sleep study. Around $2-3,000, as I recall. > At the time (about a year ago) I did not have insurance (I do now) so > the cost put me off, but even more of a concern is the fact that I have > ZERO doubt I would not be able to sleep 2 winks in the setting they > showed me. I often have enough trouble falling asleep in a very nice > hotel room with my wife when we travel, let alone all wired up in a lab. > When I told them this & asked what they do in such cases, they replied > that after about 6 miserable hours of tossing & turning, they would call > the dr. at home & get authorization to give sleep medication. I’m no > expert, but it seems to me this might well skew the data. Also, to my > question "And if I DON’T sleep, do I still have to PAY???" They of > course replied "yes". It occurred to me that SOMEONE must have put > software on a laptop one could take home which would record at least the > majority of data required to come up with some findings, conclusions > which it would seem would be more representative than what you’d get > under the artificial & stressful atmosphere of a lab, especially if > you’re drugged. Even if they wanted to "observe" you, I’m sure this > could be done at home with modern digital video technology. And I’m > sure most of us have the brains to be able to stick on the requisite > test leads etc. as instructed by the doctor & staff while sitting on the > edge of our beds at home. I guess they figure it’d be harder to get > people to pony up 3 grand for this. I did a brief search & did find at > least one place that offers a home test, called "Sleep Quest", the > portion of their web site dealing with at-home testing is > http://store.yahoo.com/sleepquest/testsection.html The have a rig that > fits entirely on the patient’s left arm, and is said to "measure > peripheral arterial tone (PAT). (Peripheral arterial tone accurately > identifies respiratory events during sleep). In addition to the PAT > Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement > (actigraphy) and sleep/wake states". $495.00, including a report for > your doctor. Before I look any further, I thought I see if any of the > knowledgable people on this NG have had any experience with home testing > in general and "Sleep Quest" in particular. > TIA > Dan

Response:

I think I may have a sleep related problem, and had an initial consultation with a sleep center in the area, which (not surprisingly) recommended their in-center sleep study. Around $2-3,000, as I recall. At the time (about a year ago) I did not have insurance (I do now) so the cost put me off, but even more of a concern is the fact that I have ZERO doubt I would not be able to sleep 2 winks in the setting they showed me. I often have enough trouble falling asleep in a very nice hotel room with my wife when we travel, let alone all wired up in a lab. When I told them this & asked what they do in such cases, they replied that after about 6 miserable hours of tossing & turning, they would call the dr. at home & get authorization to give sleep medication. I’m no expert, but it seems to me this might well skew the data. Also, to my question "And if I DON’T sleep, do I still have to PAY???" They of course replied "yes". It occurred to me that SOMEONE must have put software on a laptop one could take home which would record at least the majority of data required to come up with some findings, conclusions which it would seem would be more representative than what you’d get under the artificial & stressful atmosphere of a lab, especially if you’re drugged. Even if they wanted to "observe" you, I’m sure this could be done at home with modern digital video technology. And I’m sure most of us have the brains to be able to stick on the requisite test leads etc. as instructed by the doctor & staff while sitting on the edge of our beds at home. I guess they figure it’d be harder to get people to pony up 3 grand for this. I did a brief search & did find at least one place that offers a home test, called "Sleep Quest", the portion of their web site dealing with at-home testing is http://store.yahoo.com/sleepquest/testsection.html The have a rig that fits entirely on the patient’s left arm, and is said to "measure peripheral arterial tone (PAT). (Peripheral arterial tone accurately identifies respiratory events during sleep). In addition to the PAT Signal, the Watch_PAT100 records oxygen saturation, pulse rate, movement (actigraphy) and sleep/wake states". $495.00, including a report for your doctor. Before I look any further, I thought I see if any of the knowledgable people on this NG have had any experience with home testing in general and "Sleep Quest" in particular. TIA Dan

Response:

howdy

admin — Sun, 19 Sep 2004 00:00:00 +0000

Question:

im new here and just want to introduce myself, just call me kujo. im going for my next sleep study on monday night to get my CPAP. and im curious does anyone know anyone who has out grown this O.S.D. or gotton over it by losing weight? my DR. doesnt speak the best of english so i dont get the best of answer. so any way if i dont get an answer on this question i have still learned alot from this group. THANKS FOR HAVING ME KUJO HAVE A DAY ! ! ! ! ! !

Response:

On Sun, 19 Sep 2004 19:49:21 -0400, CARAZEEEEEEE KUJO wrote: >im new here and just want to introduce myself, just call me kujo. im >going for my next sleep study on monday night to get my CPAP. and im >curious does anyone know anyone who has out grown this O.S.D. or gotton >over it by losing weight? my DR. doesnt speak the best of english so i >dont get the best of answer.

Occasionally, people do improve with losing weight. As far as "outgrowing," it’s more likely "worsens with age."

Response:

On Sun, 19 Sep 2004 19:49:21 -0400, iamc…@webtv.net (CARAZEEEEEEE KUJO) wrote: >im new here and just want to introduce myself, just call me kujo. im >going for my next sleep study on monday night to get my CPAP. and im >curious does anyone know anyone who has out grown this O.S.D. or gotton >over it by losing weight? my DR. doesnt speak the best of english so i >dont get the best of answer. so any way if i dont get an answer on this >question i have still learned alot from this group. > THANKS FOR HAVING ME > KUJO >HAVE A DAY ! ! ! ! ! !

I was on cpap at 15. I lost 120 pounds. My obstructive sleep apnea got worse. I was put on bipap at 20/16. I lost another 80 pounds. I no longer had obstructive sleep apnea so no long utilized either cpap or bipap. I’ve now lost a total of over 235 pounds. My neck has shrunk over 3 inches and I no longer have a double chin. I figure the reduction in neck size and the firming up of the neck area is what made the difference. Just my opinion though. So, in my case, the answer was both yes and no. However, not all obstructive sleep apnea is due to weight issues. Skinny people can have obstructive sleep apnea too. So, it more depends on what caused your sleep apnea as to whether weight loss will impact upon it. Hope this helps you. — Kiyoshi – The reverse side also has a reverse side. "Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence." – John Adams –

Response:

CARAZEEEEEEE KUJO wrote: > im new here and just want to introduce myself, just call me kujo. im > going for my next sleep study on monday night to get my CPAP. and im > curious does anyone know anyone who has out grown this O.S.D. or gotton > over it by losing weight? my DR. doesnt speak the best of english so i > dont get the best of answer. so any way if i dont get an answer on this > question i have still learned alot from this group. > THANKS FOR HAVING ME > KUJO > HAVE A DAY ! ! ! ! ! !

Yes Apnea cang away if you lost enough weight. This does not happen to everyone. I also know skinney guys who have sleep apnea.

Response:

- Hide quoted text — Show quoted text -rob wrote: > CARAZEEEEEEE KUJO wrote: >> im new here and just want to introduce myself, just call me kujo. im >> going for my next sleep study on monday night to get my CPAP. and im >> curious does anyone know anyone who has out grown this O.S.D. or gotton >> over it by losing weight? my DR. doesnt speak the best of english so i >> dont get the best of answer. so any way if i dont get an answer on this >> question i have still learned alot from this group. >> THANKS FOR HAVING ME >> KUJO >> HAVE A DAY ! ! ! ! ! ! > Yes Apnea cang away if you lost enough weight. This does not happen to > everyone. I also know skinney guys who have sleep apnea.

and I am hoping that for me its a weight thing. My sleep doc says yes. I’ve just started on herbalife to get me kickstarted on weightloss, I feel like crap carrying all that extra baggage around, and you get to a point where you dont know if its the weight or the apnea or a combination. 5 pounds gone and many more to get rid of. Fingers crossed that in a year I can get rid of the machine entirely. And Kujo… welcome. Theres a lot of experienced CPAP people in this group, all your questions will be answered

Response:

black cohosh – beware…. Article

admin — Wed, 15 Sep 2004 00:00:00 +0000

Question:

Liver risk with menopause herb revealed Source: Menopause 2004; 11: 575-7 Describing the case of a postmenopausal woman who developed autoimmune hepatitis shortly after she began taking an herbal menopausal supplement. For the first time, US clinicians report a case of significant autoimmune hepatitis likely provoked by use of black cohosh (Actaea racemosa), an herbal supplement marketed to treat menopausal symptoms. The 57-year-old woman presented with a 2-week history of lethargy and fatigue, 3 weeks after she began using black cohosh for the treatment of hot flashes, Stanley Cohen (University of Chicago, Illinois) and colleagues explain. Her long-term medical history included diabetes, hypertension, polymyositis, and obstructive sleep apnea, but all related medications had been used for at least 2 years. Laboratory data showed significant elevations in aspartate aminotransferase and alanine aminotransferase, as well as mildly elevated alkaline phosphatase levels, although the woman had no personal or family history of liver disease. An antinuclear antibody titer was positive, and liver biopsy revealed "piecemeal necrosis and lobular infiltrates with extensive plasma cells and eosinophils," the team reports, which led to the diagnosis of drug-induced autoimmune hepatitis, most likely to due to black cohosh. While herbal remedies, including ma-huang and dai-saiko-to, have previously been associated with autoimmune hepatitis, black cohosh was thought to cause only mild side effects, such as stomach discomfort, the authors note. In view of their experience, however, Cohen et al conclude: "Herbal-induced autoimmune hepatitis should be considered when liver dysfunction or systemic symptoms develop in people taking black cohosh." Posted: 15 September 2004

Response:

- Hide quoted text — Show quoted text -Ria! wrote: > Liver risk with menopause herb revealed > Source: Menopause 2004; 11: 575-7 > Describing the case of a postmenopausal woman who developed autoimmune > hepatitis shortly after she began taking an herbal menopausal > supplement. > For the first time, US clinicians report a case of significant > autoimmune hepatitis likely provoked by use of black cohosh (Actaea > racemosa), an herbal supplement marketed to treat menopausal symptoms. > The 57-year-old woman presented with a 2-week history of lethargy and > fatigue, 3 weeks after she began using black cohosh for the treatment > of hot flashes, Stanley Cohen (University of Chicago, Illinois) and > colleagues explain. > Her long-term medical history included diabetes, hypertension, > polymyositis, and obstructive sleep apnea, but all related medications > had been used for at least 2 years.

Ya know, it’s one thing to publish an article – based on ONE patient – saying that you suspect that black cohosh might have been involved in a patient’s hepatitis. It’s a WHOLE ‘NOTHER THING to jump to a conclusion, "Liver risk with menopause herb revealed," that sounds like a headline from National Enquirer. Shame on them! Based on ONE patient! Not to mention that the woman had a whole bunch of other illnesses going, was taking a bunch of other medications, and that fact that she’d been taking them for a couple of years doen’t mean squat. It could have taken a couple of years for adverse side effects to manifest themselves. And they didn’t mention the dose of black cohosh she had taken – maybe she was ODing on the theory that if a little helps a little, a lot would help a lot. I neither support nor defend the use of black cohosh – and I never took it myself. But the doctors ought to be better scientists than this, and if they can’t help themselves, the editors of the journal should have noticed! FurPaw — "In a sense, we are hallucinating all the time. What we call normal vision is our selecting the hallucination that best fits reality." – V. S. Ramachandran To reply, unleash the dog

Response:

FurPaw wrote in news:VMmdnThJkbR9X9XcRVn- p…@comcast.com: – Hide quoted text — Show quoted text -> Ria! wrote: >> Liver risk with menopause herb revealed >> Source: Menopause 2004; 11: 575-7 >> Describing the case of a postmenopausal woman who developed autoimmune >> hepatitis shortly after she began taking an herbal menopausal >> supplement. >> For the first time, US clinicians report a case of significant >> autoimmune hepatitis likely provoked by use of black cohosh (Actaea >> racemosa), an herbal supplement marketed to treat menopausal symptoms. >> The 57-year-old woman presented with a 2-week history of lethargy and >> fatigue, 3 weeks after she began using black cohosh for the treatment >> of hot flashes, Stanley Cohen (University of Chicago, Illinois) and >> colleagues explain. >> Her long-term medical history included diabetes, hypertension, >> polymyositis, and obstructive sleep apnea, but all related medications >> had been used for at least 2 years. > Ya know, it’s one thing to publish an article – based on ONE patient – > saying that you suspect that black cohosh might have been involved in a > patient’s hepatitis. > It’s a WHOLE ‘NOTHER THING to jump to a conclusion, "Liver risk with > menopause herb revealed," that sounds like a headline from National > Enquirer. > Shame on them! Based on ONE patient! > Not to mention that the woman had a whole bunch of other illnesses > going, was taking a bunch of other medications, and that fact that she’d > been taking them for a couple of years doen’t mean squat. It could have > taken a couple of years for adverse side effects to manifest themselves. > And they didn’t mention the dose of black cohosh she had taken – maybe > she was ODing on the theory that if a little helps a little, a lot would > help a lot. > I neither support nor defend the use of black cohosh – and I never took > it myself. But the doctors ought to be better scientists than this, and > if they can’t help themselves, the editors of the journal should have > noticed!

Uhm, before everybody gets all bent out of shape, please note the publication: the journal ‘Menopause’ is actually ‘Menopause : the journal of the North American Menopause Society’. Remember our old friend, NAMS? For those who don’t know, NAMS is pro-drug, pro-big-pharma, and anti- herbal. They get big bucks from the makers of HT. They never met a drug they didn’t like, and never met an herbal/natural remedy they didn’t hate. Chakolate — Science is facts; just as houses are made of stones, so is science made of facts; but a pile of stones is not a house and a collection of facts is not necessarily science. –Henri Poincare

Response:

In article , Chakolate wrote: >Uhm, before everybody gets all bent out of shape, please note the >publication: the journal ‘Menopause’ is actually ‘Menopause : the journal >of the North American Menopause Society’. Remember our old friend, NAMS? >For those who don’t know, NAMS is pro-drug, pro-big-pharma, and anti- >herbal. They get big bucks from the makers of HT. They never met a drug >they didn’t like, and never met an herbal/natural remedy they didn’t hate. >Chakolate

I didn’t know about this. Thanks, I’ll be aware of this journal. aphrodite

Response:

- Hide quoted text — Show quoted text -quthqqy8e75k…@jetable.com (aphrodite) wrote in message … > In article , Chakolate wrote: > >Uhm, before everybody gets all bent out of shape, please note the > >publication: the journal ‘Menopause’ is actually ‘Menopause : the journal > >of the North American Menopause Society’. Remember our old friend, NAMS? > >For those who don’t know, NAMS is pro-drug, pro-big-pharma, and anti- > >herbal. They get big bucks from the makers of HT. They never met a drug > >they didn’t like, and never met an herbal/natural remedy they didn’t hate. > >Chakolate > I didn’t know about this. Thanks, I’ll be aware of this journal. > aphrodite

=========== Sigh! WHat are we to believe? Ria! ===============

Response:

Ria! wrote: > Sigh! WHat are we to believe? > Ria!

Nothing. What we can do is evaluate what we read critically, asking if it makes sense, if the science is "good science," if the conclusions drawn are warranted by the data, who supported the research ("Follow the money") and who is publishing the study. When there is NO science, we have to rely on common sense and not on hope or the will to believe that "this" is going to be the long sought-after "fix." FurPaw — "In a sense, we are hallucinating all the time. What we call normal vision is our selecting the hallucination that best fits reality." – V. S. Ramachandran To reply, unleash the dog

Response:

UPPP Surgery

admin — Sun, 15 Aug 2004 00:00:00 +0000

Question:

Ctkdr wrote: >snipped < > I decided to go with the UPPP. Not being able to find much info > on the subject. I will try to give a day by day description of > what to expect.

Also, please come back at six months, nine months and a year to tell us how you are doing. I felt great and slept great for the first six months after my UPPP. — BigAl db-g…@bigfoot.com

Response:

I spent the night in the sleep lab of our local hospital and was diagnosed with severe OSA(obstructive sleep apnea). I tried the CPAP system but could not keep the mask on for the whole night. I have two young children and it also scared the heck out of them when they came running in the room during a thunderstorm or bad dream. I decided to go with the UPPP. Not being able to find much info on the subject. I will try to give a day by day description of what to expect.

Response:

Hi, Elohs, Well, you’re certainly resilient, being willing to go back under the knife! Why the UPPP? Why not just septoplasty? At least for starters. (Could it be that septoplasty is fairly simple and not as lucrative as UPPP. Nah!) Is septoplasty an outpatient procedure? (Excuse my ignorance.) UPPP is dpne in the hospital with general anesthetic, and would require some hospital time, which along with the surgery implies some additional risk. If I were you I would continue (as you are doing) to ask hard questions, such as about what’s left of your palate and uvula to do UPPP on. Perhaps you do have some loose tissue in your throat that the surgeon could tighten up, and maybe that would be beneficial. Best wishes, Sally in Seattle JSo…@aol.com

Response:

In article <54ki5n$…@newsbf02.news.aol.com>, jso…@aol.com (JSoest) writes: >Why the UPPP? Why not just septoplasty? At least for starters. (Could it >be that septoplasty is fairly simple and not as lucrative as UPPP. Nah!) >Is septoplasty an outpatient procedure? (Excuse my ignorance.) UPPP is >dpne in the hospital with general anesthetic, and would require some >hospital time, which along with the surgery implies some additional risk. >If I were you I would continue (as you are doing) to ask hard questions, >such as about what’s left of your palate and uvula to do UPPP on. Perhaps >you do have some loose tissue in your throat that the surgeon could >tighten up, and maybe that would be beneficial.

Thank you Sally for your valuable comments. I suggested just septoplasty (as I also have those creeping thoughts about who is benefitting here). My doctor said he believes I need both procedures; and a second opinion agreed (of course he also benefits from performing surgery). I have been told the septoplasty does not decrease the severity of sleep apnea, but will make CPAP treatment more comfortable, as well as enhancing how I breathe when awake. In my case, just the septoplasty would also require one overnight hospital stay for close observation, according to my dr. Apparently the 5 LAUPs resulted in a very peaked (triangular) shaped opening to my throat instead of the enlarged dome that was the goal. I had noticed this. My apnea is much more severe than before the LAUPs because of the resultant smaller opening. The doc says there are 3 possible options: 1) I don’t have the UPPP and my condition stays the same; 2) I have the UPPP and fall into the 65% of his patients who benefit from the surgery; 3) I have the UPPP and fall into the 35% who do not change, but at least I tried to correct the condition. The tissue on either side of the triangular peak is not loose; on the contrary, it’s scar tissue that does a good job at sealing off the air passage. This tissue would be removed along with some additional tissue to achieve a larger domed opening than I started out with. I have been reassured that the hospital anesthesiologists are experienced in working with sleep apnea patients. Continued dialog is making UPPP appear like an intelligent choice. Messages from Brian and Linda have been informative and reassuring. I would welcome additional comments. Gratefully, Ethel. El…@aol.com

Response:

> Elohs wrote: > > ….. > > I have a deviated septum and have been using Flonase and a Breathe Right > > strip each night. ……. > > Ethel. > > El…@aol.com

I had a UPPP performed in April 1995. I had about 20 apneas/hr prior to the surgery. I had a follow up study in Sept. 1996 and now have no sleep apnea. I did notice a big difference after the surgery but continued to have problems with lethargy. This is not sleep related but appears to be depression (brought on the the apnea maybe). So the UPP worked for me. I understood before the surgery that it was not a guarenteed procedure. Brian

Response:

Beware of UPPP. There is a rumor being disseminated amoung astute clinicians that UPPP will compromise the "seal" necessary for ultimate CPAP success. I have personally discovered this to be the case. P.S. If you know a foreign language, you can say goodbye to it as you know it! Doug.

Response:

Hello everyone – I need to call on you once again for some insightful assistance. I have used CPAP for over 4 years, and then tried LAUP. I had 5 LAUP procedures over a 10 month period last year. Beyond the terrible experience, the results were extremely disappointing; bottom line – sleep apnea is now worse (326 apneas during the last sleep study). I have a deviated septum and have been using Flonase and a Breathe Right strip each night. Failure to use one or both results in increased tiredness the next day. I thought that possibly correction of the deviated septum would ease air flow from the CPAP through my nose and eliminate use of Flonase and Breathe Right. I discussed this with my primary care physician and he was quite willing to make a referral to an otolaryngologist. I did not want to return to the one who did 5 LAUPs and failed to tell me that the number of apneas increased. I have consultanted 2 different ENT doctors in the last 3 weeks, and both are recommending a septoplasty and UPPP. I was unprepared to hear a UPPP recommendation, and based on previous postings over the past year, do not have a positive feeling about the surgery. I consulted my sleep disorders center physician and he reminded me of the low success rate. I would appreciate some opinions from the group, particularly from those who have had UPPP. Thank you for listening- Ethel. El…@aol.com

Response:

Elohs wrote: > ….. > I have a deviated septum and have been using Flonase and a Breathe Right > strip each night. ……. > Ethel. > El…@aol.com

I had a deviated septum – got it corrected several years before I ever heard of apnea. It was wonderful for my breathing. The CPAP did wonders for my sleeping. I though I slept like a log. A sleep study said it was 39%. The boss threatened to fire me, almost had several auto accidents, etc. (you’ve heard it all). Had to fight with my Dr. to get to a pulmonary Dr. to get to a sleep study (why such a big deal?). Went on CPAP on a Friday night, read a book until 11 pm on Saturday night!!! — Paul in AJ AZ NRA Endowment Member Checkout the Metal Web News at http://tbr.state.tn.us/~wgray

Response:

- Hide quoted text — Show quoted text -el…@aol.com (Elohs) wrote: >Hello everyone – >I need to call on you once again for some insightful assistance. >I have used CPAP for over 4 years, and then tried LAUP. I had 5 LAUP >procedures over a 10 month period last year. Beyond the terrible >experience, the results were extremely disappointing; bottom line – sleep >apnea is now worse (326 apneas during the last sleep study). >I have a deviated septum and have been using Flonase and a Breathe Right >strip each night. Failure to use one or both results in increased >tiredness the next day. I thought that possibly correction of the >deviated septum would ease air flow from the CPAP through my nose and >eliminate use of Flonase and Breathe Right. I discussed this with my >primary care physician and he was quite willing to make a referral to an >otolaryngologist. I did not want to return to the one who did 5 LAUPs and >failed to tell me that the number of apneas increased. >I have consultanted 2 different ENT doctors in the last 3 weeks, and both >are recommending a septoplasty and UPPP. I was unprepared to hear a UPPP >recommendation, and based on previous postings over the past year, do not >have a positive feeling about the surgery. I consulted my sleep disorders >center physician and he reminded me of the low success rate. >I would appreciate some opinions from the group, particularly from those >who have had UPPP.

I was diagnosed with sleep apnea in April 1996 having had a septoplasty done in June 1995, at which time my sleep apnea was undiagnosed. The septoplasty did not cure my sleep apnea. However …… now that I am using CPAP I realise that the septoplasty was essential. I could hardly breathe through my nose before the operation, now I can breathe easily and so the CPAP is vastly more effective than it would have been without the operation. If I had the benefit of hindsight I would not hesitate to do it again. Whilst I am not a medic I feel fairly sure that septoplasty not such a major surgical procedure (from the patient’s point of view) when compared with UPPP or LAUP. Whilst the operation itself may be a little more involved I would not describe it as particularly painful or difficult to recover from. To endure 5 LAUP’s must be some sort of a world record, my heart goes out to you. Alas there seem to be too many surgeons who are all too keen to operate to ‘cure’ sleep apnea when nasal CPAP would appear to be the indicated treatment. Of course there’s no money in CPAP for a surgeon. I wonder if there’s a connection here … ? In my opinion your sleep disorders physician would be a better source of advice than an ENT surgeon. I have the highest regard for mine – surgery (other than septoplasty) is excluded from his menu. Whilst I am finding CPAP difficult, the surgical alternative is not one I would wish to contemplate. Regards, Tony Polson Haywards Heath, West Sussex, UK email: t…@polson.demon.co.uk

Response:

I’ve been reading these posts from time to time and I’ve noticed a lot of negative posts about UPPP surgery. I wondered if I could get a unbiased opinion from as many as want to reply about it and why are most posts are negative? (seemingly) Thanks for your input Bob Been on CPAP for 18 months

Response:

Bob wrote: > I’ve been reading these posts from time to time and I’ve noticed a lot of > negative posts about UPPP surgery. I wondered if I could get a unbiased > opinion from as many as want to reply about it and why are most posts are > negative? (seemingly) > Thanks for your input > Bob > Been on CPAP for 18 months

I had a UPPP about six years ago. I was unable to tolerate CPAP at a pressure of 16 because I woke up every morning with severe sinus headaches. The surgeon put me under with a general anesthetic because I have an active gag reflex. I woke up in ICU because my O2 sat went pretty low during surgery, but I had been told ahead of time that might happen. I was talking with the overnight nurse and told that I would be going home in the morning. She said "No way. Nobody goes straight home from ICU." I did. With the drugs I wasn’t really in any pain and I slept pretty good. Went back to work three weeks later. In my mind, I had minimal pain during recovery, especially when compared to a gout attack. At that point I was pretty happy with the surgery. I slept well, lost weight, and had lots of energy for about six months. then I started getting tired when I woke, etc. All the signs of sleep apnea and almost lost my job. I went to a new sleep doctor and she sent me for a titration study with BiPAP. The pressure was set at 18/9 and I had no problems. With my sleep docs concurrence a couple of years ago I did an experiment. Over several weeks I slowly raised the EPAP pressure to see if I would be able to use a CPAP instead of the BiPAP. The highest exhale pressure I could use was 14. Any higher and the severe headaches returned. What’s the point? If the original doc had told me about BiPAP and I tried it, I probably would have never have had the surgery. I never regretted the surgery, it just didn’t work. By the way, I have severe sleep apnea and my O2 sat went down to below 70% at my original test and 74% during surgery while I was breathing oxygen. Im my opinion there is no reason for UPPP for someone who has moderate or severe sleep apnea until all the varieties of PAP have been tried. To make this fair. My sister’s brother in law had a very mild case of sleep apnea. He had LAUP between 9 months and a year ago. He’s still doing fine. For a mild case of OSA, I would consider LAUP or Somnoplasty before I would have a UPPP. UPPP still has a place, it’s just not right for most of the patients that have it done. If you go to a surgeon, you usually get a opinion that the surgical option is the way to go. I also have a friend at work who used CPAP for a while, but doesn’t use it anymore and feels fine. Hope this helps, Big Al db-g…@bignospamfoot.com Remove nospam to reply via email

Response:

On Fri, 4 Feb 2000 16:43:52 -0500, "Bob" wrote: >I’ve been reading these posts from time to time and I’ve noticed a lot of >negative posts about UPPP surgery. I wondered if I could get a unbiased >opinion from as many as want to reply about it and why are most posts are >negative? (seemingly)

Surgical treatment for OSA is best described as playing Russian roulette… with two or three bullets in the standard six-shot revolver. The recovery can be nasty and the success rate is so-so. What I’ve heard is that half the patients get no better, and half get 50% better. We have some European posters (where they seem to have done a lot more outcomes research on the subject) who have said that in Europe that doctors rarely if ever get out the knife. After all, the doctor can’t make many Lexus payments from putting the patient on CPAP… it’s more like the phone bill.

Response:

HI Bob, Well, there are a lot of negative posts about UPPP because it doesn’t work very well. What gets missed in this discussion is that state-of-the-art surgery works much, much better than UPPP. I really don’t know why many folks here keep talking about UPPP – your guess is a good as mine. Your basic UPPP has about a 10% chance of curing you in an unselected case (random). The better surgeries have a much better chance. Bill Dement, the "father of sleep medicine" would figure that your odds at a successful outcome in the first phase of specialized sleep apnea surgery at 60-70% (reference: "The Promise of Sleep", William Dement, page 189). Now 60-70% at the first go is not bad. Keep in mind that this means that 30-40% are not going to be cured. That is a lot of folks. Another thing which can happen is that the overall sleep apnea effect can be altered. This does happen and I have seen it. In my case, the AI (complete apneas, defined as total cessation of breath for more than 10 seconds) decreased while the hypopneas (defined as 50% or more reduction in airflow for more than 10 seconds with a corresponding decrease in O2 sat of 3%) increased. The overall effect in my case was the the minimum O2 sat levels decreased, even though the number of complete apneas decreased. Ok. That can happen. So, it can be that your x-PAP pressures may need to be changed if you are in the 30-40% who are not cured after the first surgery. There are folks here in this newsgroup who would claim that perhaps after competent surgery, x-PAP won’t work anymore if the surgery fails. I see no factual evidence to support such a claim. Certainly the founders of sleep medicine, Bill Dement and Christian Guilleminault would not make such a claim – so who are you going to believe? I postulate that perhaps some folks have had incompetent surgery. I am not saying that the pressures will not change. I am not saying that perhaps you won’t need bi-pap instead of perhaps cpap. I am saying that I have heard of no factual basis for a claim that "x-pap may not work after competent surgery". On another point, it turns out that there is an inverse correlation between the severity of the disease and the probability of being cured with an initial surgery. In other words, the bigger the problem, the less chance that the initial surgery will work. Actually this correlation is not so surprising. Duh! If the first surgery doesn’t work, then another possibility is the double jaw advancement. The same folks who would tell you that a UPPP has less than a 10% chance of working and that an initial surgery by a sleep apnea specialist has >60% of working, would tell you that they believe that this has a >95% chance. There are multiple surgical groups in the world who are now achieving this success rate; success being defined as essentially that you do not have sleep apnea anymore and need no further treatment (there is a 4 point list from the Stanford folks for "success" which I’ve repeated in another thread). So, there are much better approaches to sleep apnea surgery than UPPP. There are even reversible versions of UPPP where instead of amputating the uvula, it is reflected back and sutured essentially into the wall of the throat. So, in summary, the surgical state-of-the-art for sleep apnea treatment has advanced much further than the UPPP. Some surgical groups don’t UPPP’s this unless the newer reversible procedures can’t be done for some reason on that particular patient. Also, in most cases where the disease is severe enough to warrant surgery, typically some sort of procedure on the tongue will be done at the same time. This will give you a better than 50% go at it in the first round. Is that worth it? I can’t answer that for you. If the non surgical therapies are working for you, then stay with ‘em. I say do surgery when there is no other way. I know that I’m going to get flamed even though I consistently say that, so what? Flame on… /Marshall mmth…@attglobal.net – Hide quoted text — Show quoted text -Bob wrote: > I’ve been reading these posts from time to time and I’ve noticed a lot of > negative posts about UPPP surgery. I wondered if I could get a unbiased > opinion from as many as want to reply about it and why are most posts are > negative? (seemingly) > Thanks for your input > Bob > Been on CPAP for 18 months

Response:

Bob, If you find an honest surgeon then UPPP is successful in STOPing Sleep Apnea in only a VERY few patients. A successful UPPP is defined as 50% reduction in 1/2 the patients. Now, if the doctor does some looking and can actually narrow down the place of obstruction you might consider surgery. The only problem is the lack of studies showing that long term, surgery helps. Most of the studies show just the opposite for long term results. Bob wrote: > I’ve been reading these posts from time to time and I’ve noticed a lot of > negative posts about UPPP surgery. I wondered if I could get a unbiased > opinion from as many as want to reply about it and why are most posts are > negative? (seemingly) > Thanks for your input > Bob > Been on CPAP for 18 months

– Peter, member CAUCE, www.cauce.org I report SPAMers. I actively boycott SPAM advertisers and recommend such action to everyone I know.

Response:

Bob, I think that it’s impossible to get an unbiased opinion. Those that have had UPPP (and I haven’t heard of anyone who has had a successful one) are biased against it. Surgeons who advocate it (and they seem to be mostly in the US) are biased in favour of it. In Ireland, at present, the procedure is seldom if ever used because it is extremely invasive, extremely painful and there is an extremely small chance that it might work and I believe that the situation is similar in the UK. I had UPPP in 1994 which proved unsuccessful and thankfully I am compliant with CPAP now. My sleep doc described UPPP as barbaric.. Whether my posting is biased or not, it is factual. Dan. Bob wrote in message

news:389b4821_1@news.cybertours.com… – Hide quoted text — Show quoted text -> I’ve been reading these posts from time to time and I’ve noticed a lot of > negative posts about UPPP surgery. I wondered if I could get a unbiased > opinion from as many as want to reply about it and why are most posts are > negative? (seemingly) > Thanks for your input > Bob > Been on CPAP for 18 months

Response:

On Mon, 7 Feb 2000 22:35:09 -0000, "D. Smyth" wrote: >I think that it’s impossible to get an unbiased opinion. Those that >have had UPPP (and I haven’t heard of anyone who has had a >successful one) are biased against it.

I know somebody who claims to have had a successful UPPP. He didn’t want to be stuck on a CPAP, and his wife assures me he’s much improved. Being the devils’ advocate, however, I wonder if a lot of his improvement was because he also had some nose remodeling done at essentially the same time. >Surgeons who advocate it (and they seem to be mostly in the US) >are biased in favour of it.

Surgeon$ are always in favour of things that generate more $urgical income. (If that comes out weird on your side of the pond, the "$" is the symbol for the dollar sign.) It doesn’t take a rocket scientist to figure that one out… but you have one here if you need it.

Response:

Marshall Congratulations on an excellent cotribution. As you say so elegantly there are many options. Sleep disordered breathing IMHO is mostly a multi factorial problem and it may that a combinations of therapies will be needed for lots of people. I am going to doc to-morrow to discuss tongue somnoplsty. John Marshall Thomas wrote in message

news:389C1CFE.66755B28@attglobal.net… – Hide quoted text — Show quoted text ->HI Bob, >Well, there are a lot of negative posts about UPPP because it >doesn’t work very well. What gets missed in this discussion is >that state-of-the-art surgery works much, much better than >UPPP. I really don’t know why many folks here keep talking >about UPPP – your guess is a good as mine. >Your basic UPPP has about a 10% chance of curing you in an >unselected case (random). The better surgeries have a much >better chance. Bill Dement, the "father of sleep medicine" >would figure that your odds at a successful outcome in the >first phase of specialized sleep apnea surgery at 60-70% >(reference: "The Promise of Sleep", William Dement, page 189). >Now 60-70% at the first go is not bad. Keep in mind that this >means that 30-40% are not going to be cured. That is a lot >of folks. Another thing which can happen is that the overall >sleep apnea effect can be altered. This does happen and I have >seen it. In my case, the AI (complete apneas, defined as total >cessation of breath for more than 10 seconds) decreased while >the hypopneas (defined as 50% or more reduction in airflow >for more than 10 seconds with a corresponding decrease in >O2 sat of 3%) increased. The overall effect in my case was >the the minimum O2 sat levels decreased, even though the >number of complete apneas decreased. Ok. That can happen. >So, it can be that your x-PAP pressures may need to be changed >if you are in the 30-40% who are not cured after the first >surgery. There are folks here in this newsgroup who would >claim that perhaps after competent surgery, x-PAP won’t >work anymore if the surgery fails. I see no factual evidence >to support such a claim. Certainly the founders of sleep >medicine, Bill Dement and Christian Guilleminault would not >make such a claim – so who are you going to believe? I postulate >that perhaps some folks have had incompetent surgery. >I am not saying that the pressures will not change. I am not >saying that perhaps you won’t need bi-pap instead of perhaps >cpap. I am saying that I have heard of no factual basis for >a claim that "x-pap may not work after competent surgery". >On another point, it turns out that there is an inverse correlation >between the severity of the disease and the probability of >being cured with an initial surgery. In other words, the bigger >the problem, the less chance that the initial surgery will work. >Actually this correlation is not so surprising. Duh! >If the first surgery doesn’t work, then another possibility >is the double jaw advancement. The same folks who would tell >you that a UPPP has less than a 10% chance of working and >that an initial surgery by a sleep apnea specialist has >60% >of working, would tell you that they believe that this has >a >95% chance. There are multiple surgical groups in the world >who are now achieving this success rate; success being defined >as essentially that you do not have sleep apnea anymore and need >no further treatment (there is a 4 point list from the Stanford >folks for "success" which I’ve repeated in another thread). >So, there are much better approaches to sleep apnea surgery >than UPPP. There are even reversible versions of UPPP where >instead of amputating the uvula, it is reflected back and >sutured essentially into the wall of the throat. >So, in summary, the surgical state-of-the-art for sleep >apnea treatment has advanced much further than the UPPP. Some >surgical groups don’t UPPP’s this unless the newer reversible >procedures can’t be done for some reason on that particular >patient. Also, in most cases where the disease is severe enough >to warrant surgery, typically some sort of procedure on the >tongue will be done at the same time. This will give you a >better than 50% go at it in the first round. Is that worth it? >I can’t answer that for you. If the non surgical therapies >are working for you, then stay with ‘em. I say do surgery when >there is no other way. I know that I’m going to get flamed even >though I consistently say that, so what? Flame on… >/Marshall >mmth…@attglobal.net >Bob wrote: >> I’ve been reading these posts from time to time and I’ve noticed a lot of >> negative posts about UPPP surgery. I wondered if I could get a unbiased >> opinion from as many as want to reply about it and why are most posts are >> negative? (seemingly) >> Thanks for your input >> Bob >> Been on CPAP for 18 months

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- Hide quoted text — Show quoted text -Marshall Thomas wrote: > <> > So, it can be that your x-PAP pressures may need to be changed > if you are in the 30-40% who are not cured after the first > surgery. There are folks here in this newsgroup who would > claim that perhaps after competent surgery, x-PAP won’t > work anymore if the surgery fails. I see no factual evidence > to support such a claim. Certainly the founders of sleep > medicine, Bill Dement and Christian Guilleminault would not > make such a claim – so who are you going to believe? I postulate > that perhaps some folks have had incompetent surgery. > I am not saying that the pressures will not change. I am not > saying that perhaps you won’t need bi-pap instead of perhaps > cpap. I am saying that I have heard of no factual basis for > a claim that "x-pap may not work after competent surgery". > <>

The one thing I have heard many times is that some of the automatic pressure regulating PAP machines will no longer work after an UPPP. Those are the machines that detect an apnea by the sound of snoring. Since my UPPP I no longer snore, even though I still have severe sleep apnea. I’ve been told that I do make a high pitched noise if I fall asleep on the couch. Big Al db-g…@bignospamfoot.com Remove nospam to reply via email

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On Sat, 08 Mar 1997 18:27:38 -0800, k…@abs.net wrote: >About a 2 years ago I was diagnosed with accute obstructive sleep >apnea. A CPAP was perscribed (7 – 10 cm pressure). Although the CPAP >effectively resolved the sleep apnea, after about a year of feeling like >I was being launched into space everytime I went to bed, I opted for the >UPPP surgery in hopes of getting rid of the CPAP. The surgery was as >advertised; like the worse sore throat I ever had. Otherwise, no >problem. Now, a year later, and I’m still on the %$#@ CPAP and >wondering why.

How well do you breathe through your nose during the day? I ask because I hated the CPAP and I figured it would work better if I had my deiviated septum worked on. So, I had a septoplasty and than I could not tolerate the CPAP. I was breathing so well through my nose I went to get re-studued so they could lower the pressure. I did a split study and even at its lowest setting, I could not tolerate the CPAP. Interestingly, the test showed that the rest of the night, I was sleeping with about 3.5 apneas/hpopneases per hour! i.e. NORMAL! Since last MAY, I haven’t used the CPAP. If I am really stopped up, I can tell I am getting interrupted sleep, but otherwise it is normal. I am telling you this because, maybe your ENT is not looking at the whole picture! It is one thing to open a little real-estate in the throat, but is worthless if you can’t breathe through your nose. My septum was S-shaped instead of straight and I can’t ever remember breathing through both nostrils. Now my left one is 100% and the right nostril is about 50%. ( I have a small, small, nose.) Just thought I would share this with you as it might be a possible answer to your question. Fo anyone else reading this, check out your nasal airways! Septoplasty was not painful, covered by insurance, and was I was fully functioning 2 days later! The nose took about a week to be REALLY breathing. The most painful part was the hangover from the anesthesia!

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In article <33270711.147944…@library.airnews.net>, cfre…@onramp.net (Chuck French) writes: >Fo anyone else reading this, check out your nasal airways!

Check out EVERYTHING, from nostrils to larynx. Obstructions can occur anywhere along the airway, and (from what I’ve read and heard from sleep specialist — I’m not one, I’m a medical writer) most people have more than one obstruction contributing to the apnea. The causes are so multiple and variable — and the surgeries and the surgeons’ skills and experience are also variable — that so far nobody has been very successful in predicting who will have what results from surgery. Personally, if I were contemplating surgery for sleep apnea, I’d get a second, maybe even a third, opinion. Sally in Seattle JSo…@aol.com Sally in Seattle JSo…@aol.com Coauthor, with Dr. Ralph Pascualy, of Snoring and Sleep Apnea: Personal and Family Guide to Diagnosis and Treatment, published in 1996 by Demos Vermande, NY.

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About a 2 years ago I was diagnosed with accute obstructive sleep apnea. A CPAP was perscribed (7 – 10 cm pressure). Although the CPAP effectively resolved the sleep apnea, after about a year of feeling like I was being launched into space everytime I went to bed, I opted for the UPPP surgery in hopes of getting rid of the CPAP. The surgery was as advertised; like the worse sore throat I ever had. Otherwise, no problem. Now, a year later, and I’m still on the %$#@ CPAP and wondering why. Prior to the surgery, the surgeon assured me I was a "good candidate" and there was a 50 – 50 change that it would eliminate the need for the CPAP. I recently had new sleep studies done. The result was a recommendation for CPAP at 7 – 10 cm pressure. It would seem that the surgeon sold me a 2-day stay at his expensive hotel. I believe I recall reading in this newgroup of a similar experience by another "good candidate" for UPPP surgery. If my memory is correct, I’d like to hear from you. Is there any real alternative to the CPAP? My CPAP "system" is a Puritan/Bennett Companion 318 with a Respironics nasal mask. Elsewhere in the newsgroup I seen it said that this contraption was not designed for human use. I could not agree more. Actually I believe the guy who designed it was moe than a little masochistic. Replies would be appreciated, either by post or email. Karl C. Wehr k…@abs.net

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k…@abs.net wrote: > I believe I recall reading in this newgroup of a similar experience by > another "good candidate" for UPPP surgery. If my memory is correct, I’d > like to hear from you. Is there any real alternative to the CPAP? My > CPAP "system" is a Puritan/Bennett Companion 318 with a Respironics > nasal mask. Elsewhere in the newsgroup I seen it said that this > contraption was not designed for human use. I could not agree more. > Actually I believe the guy who designed it was moe than a little > masochistic. > Replies would be appreciated, either by post or email. > Karl C. Wehr > k…@abs.net

I may be the "good candidate" that you referred to. That came from the fact that I apparently have large tonsils and and a small "back of the throat." However, based on my online research and offline discussions, I am not willing to have the surgery at this time. I am currently seeing Dr. Kushida of the Stanford Sleep Clinic, (who has SF offices as well!) and I will have a CPAP study at the end of the month. Let you know how it all goes.

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On Sat, 08 Mar 1997 18:27:38 -0800, k…@abs.net wrote:

snip >problem. Now, a year later, and I’m still on the %$#@ CPAP and >wondering why. >Prior to the surgery, the surgeon assured me I was a "good candidate" >and there was a 50 – 50 change that it would eliminate the need for the >CPAP.

snip My ENT talked me out of UPPP surgery. Told me to lose 85 pounds, then come back for another visit. Turns out the UPPP surgery probably won’t help, anyway — the primary obstruction is due to a congenitally narrow jaw, which makes the opening in the back of the throat too narrow. I use the Adam’s Circuit, which uses "nasal pillows" that fit into the nostrils. It is much more comfortable that the old mask. Also, the old mask was causing my upper incisors to receed. I’m also hoping for something better than a CPAP, but it sure beats the shit out of chronic severe sleep deprivation. Disclaimer: The opinions expressed in this post belong to whoever posted them. Since there is no security or verification on the Internet, you can’t prove that it was me, or that this post didn’t get modified in transit. Whenever that gets fixed, the Internet will become the dominant mode of worldwide commerce. Until then, the Internet will be the unrestricted playground of the scam artists. From and reply addresses are bogus to defeat the bulk mailer harvestbots. ssenkraH eeL drawoH (should be easy enough to figure out…) This is not my email address: n…@internetMCI.com

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Hi all. My sleep study found apnea. The next study, with the mask, was a dismal failure–I could neither breathe nor sleep with the mask on, because of 1) Very deviated septum (ENT guy found this), and 2) chronic paranasal sinus inflammatory disease (MRI found this). The mask could not deliver any pressure through the nose, it’s blocked. The ENT guy now wants to do three things: 1. UPPP 2. Functional septoplasty 3. Bilateral inferior turbinectomy I agree that the deviated septum needs to be fixed, but I’m uneasy about the UPPP. I’d like to know a lot more about what to expect. Take care. Sam

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Sam Bradshaw wrote:

original post deleted… db-g…@worldnet.att.net wrote:

>Summary: Although UPPP was not a complete cure, I would definitely do >it again. Note that I had severe obstructions and this might not be >true for anyone with less severe OSA. My non-medical advice to you >would be to get your nose fixed first, then see how much that helps by >trying xPAP again. If you still have problems go for the UPPP. I am still unconvinced about the UPPP, but I do agree with BigAl as in my orginal post that you (and myself also) would do better by getting the nose fixed first instead of second. I’m not a doctor, so "your mileage may vary". Whatever you decide to do, good luck. /Marshall mmth…@ibm.net – Hide quoted text — Show quoted text -> — > BigAl > db-g…@worldnet.att.net

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Turbinates are fleshy masses that, as someone correctly stated, warm and humidify the air. They tend to hypertrophy-get bigger-on the side that is opposite to your septal deviation. I’m guessing it has to do with greater physical stimulation from the free flow of air on the non-obstructed side.

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Mary Lee Warren wrote in message <34763d3…@206.103.97.91>… >What is a turbinectomy?

The surgical removal of some of the bone in the nose. These particular bony plates are called turbinates. There are 3 "plates" located in each nostril. They take up quite a bit of room in your nose. They serve to help heat, humidify and filter inspired gases. Kelly

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Hummm. When I had sinus surgery, the corrected a deviated septum and enlarged the "windows" to my sinus cavities so that they would draiin better. Hope this doesn’t sound too technical. :-) Whatever they did, it really helped. mary lee – Hide quoted text — Show quoted text -Thomas Kirk" wrote: >Well as I understand it there is a trabeculae of bony tissue in your nose >and sinuses that can somtimes cause blockages, especially (as in my case) if >you have a deviated septum. A turbinectomy involves the removal of the >turbinate bones…if am in error someone please jump in..but to the best of >my knowledge that’s what it is. >Mary Lee Warren wrote in message <34763d3…@206.103.97.91>… >>What is a turbinectomy?

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What is a turbinectomy? – Hide quoted text — Show quoted text -"Thomas Kirk" wrote: >I had septoplasty and turbinectomy a few years ago and I noticed an >immediate improvement . Although I had no idea that I had apnea (Possibly I >have apnea…haven’t gotten the final results of my PSG yet) I found it much >easier to breathe and as far as colds go..my sinuses are now wide open. I >noticed over the last year that my (possible) apnea conditon has gotten >worse and have spoken to my surgeon about it. He mentioned Uvula reduction >as my uvula hangs so low as to touch the base of the back of my mouth. So >I’ll keep you posted with what I find out regarding UPPP..so far though from >on here I hear that it is very painful and may not work. Perhaps, at least >for me the CPAP and weight loss will be the way to go. >Sam Bradshaw wrote in message < >>The ENT guy now wants to do three things: >>1. UPPP >>2. Functional septoplasty >>3. Bilateral inferior turbinectomy >>Take care. >>Sam

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I had septoplasty and turbinectomy a few years ago and I noticed an immediate improvement . Although I had no idea that I had apnea (Possibly I have apnea…haven’t gotten the final results of my PSG yet) I found it much easier to breathe and as far as colds go..my sinuses are now wide open. I noticed over the last year that my (possible) apnea conditon has gotten worse and have spoken to my surgeon about it. He mentioned Uvula reduction as my uvula hangs so low as to touch the base of the back of my mouth. So I’ll keep you posted with what I find out regarding UPPP..so far though from on here I hear that it is very painful and may not work. Perhaps, at least for me the CPAP and weight loss will be the way to go. – Hide quoted text — Show quoted text -Sam Bradshaw wrote in message < >The ENT guy now wants to do three things: >1. UPPP >2. Functional septoplasty >3. Bilateral inferior turbinectomy >Take care. >Sam

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Well as I understand it there is a trabeculae of bony tissue in your nose and sinuses that can somtimes cause blockages, especially (as in my case) if you have a deviated septum. A turbinectomy involves the removal of the turbinate bones…if am in error someone please jump in..but to the best of my knowledge that’s what it is. – Hide quoted text — Show quoted text -Mary Lee Warren wrote in message <34763d3…@206.103.97.91>… >What is a turbinectomy?

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Sam, My humble advise is to get at least a couple of surgical opinions. This septoplasty stuff is basically kind of like a "rotor-rooter" job on the nose and is a quite normal procedure. If this is competently performed, the chances of an excellent result are quite simply excellent. I plan to have this done myself. I am surprised that your ENT guy "found this". Come on…if you really have a significant blockage in one of your nostrils, you already knew something was wrong. Most folks don’t notice the normal switching between nostrils which happens every 3-4 hours. I definately do and you probably do (I have 90% blockage in the right nostril). Getting the nose working right will help you breathe better when you are awake (and asleep) as well as help out on sinus infections and various ear problems. The UPP procedure is in comparison, quite speculative. Maybe it will help the sleep apnea and maybe it won’t. Your odds are somewhere around 50%, maybe. I also talked with a surgeon who recommended that I start with the UPP stuff and possibly other operations and then go on in the second step to fixing the nose. I have since talking with other surgeons who tell me that they would prefer to fix the easy stuff first, where we know that result is likely to be excellent, and then see about the more speculative surgeries. This makes sense to me. You may find that the CPAP stuff works a whole lot better if the nose and the basic breathing equipment is working in top notch form. /Marshall mmth…@ibm.net – Hide quoted text — Show quoted text -Sam Bradshaw wrote: > Hi all. > My sleep study found apnea. > The next study, with the mask, > was a dismal failure–I could neither > breathe nor sleep with the mask on, > because of 1) Very deviated septum (ENT guy > found this), and 2) chronic paranasal sinus > inflammatory disease (MRI found this). The > mask could not deliver any pressure through > the nose, it’s blocked. > The ENT guy now wants to do three things: > 1. UPPP > 2. Functional septoplasty > 3. Bilateral inferior turbinectomy > I agree that the deviated septum needs > to be fixed, but I’m uneasy about the > UPPP. I’d like to know a lot more about > what to expect. > Take care. > Sam

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Well I’m going under the knife on the 17th, wish me well. Marshall

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Hope the doc does not take too much off as that can be a problem. Usually UPPP is only good for helping with snoring and has a very low percentage for sleep apnea effectiveness. "Marshall" wrote in message

news:uf5r8.16420$nt1.1358265@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Well I’m going under the knife on the 17th, wish me well. > Marshall

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Keep us up to date Marshall! I had my surgery on 3/20. Lots of pain for about a week and a half but now I don’t have a sense of taste. Have been told that it will come back in time. GOOD LUCK! Kev Cincinnati Ohio – Hide quoted text — Show quoted text -Marshall wrote: > Well I’m going under the knife on the 17th, wish me well. > Marshall

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<< wish me well. >> We certainly do! The very best of success! Keep us posted. We will be waiting to hear your reports! Mike posted and emailed

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Good luck! I had a UPPP, turbinates and septo on 3/11. It sucked for the first couple of days, but the pain wasn’t too bad after that. Keep pounding those ice chips and fluids and you’ll do fine. Try to get some protein as soon as you can handle it. I choked down a Metrx shake a day as soon as I could. It made me feel much better. A cool air humidifier will is a must have also. Thus far, I’m happy with the results. I’ve lost 12 lbs and I’m sleeping really well. My wife says I’m a calmer person and much easier to get along with. I tried bipap for almost a year. I could not adjust to the mask, even the much touted Breeze. The only drawback is the occasional backwash of fluid or food into and out of my nose, but that only happens if I try to swallow too much at once. "Marshall" wrote in message

news:uf5r8.16420$nt1.1358265@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Well I’m going under the knife on the 17th, wish me well. > Marshall

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how did the post-op visit go? how are you feeling? glad to hear you are doing well, keep me posted. good luck and take care! "BruceR" wrote in message

news:HpdWc.32407$xi6.6193@fe2.texas.rr.com… – Hide quoted text — Show quoted text -> I’ll probably schedule the follow up sleep study in about 6 months. > Tomorrow (Mon), I see the doc for a post surgery checkup. The numbness > is subsiding and there has been no pain from the procedure at all. > "Tink" wrote in message > news:txXVc.9091$54.131372@typhoon.sonic.net… > > "Bruce Robin" wrote in message > > news:ItCVc.5618$Jn5.236@fe1.texas.rr.com… > > > How long has it been since your surgery? I had the UPPP about 18 mos > ago > > > with good improvement and the GTA almost 2 weeks ago and that seems > > > successful so far. I have most of the feeling back in my chin and > lower > > lip > > > and only my lower front teeth remain numb. The numbness subsides a > little > > > more each day as the healing continues. > > hola Bruce, > > the UPPP and GTA surgery was in October 2003. had the post-op sleep > study in > > March 2004. my front lower teeth are still a bit numb. but i am still > glad i > > had the surgery. IIRC, it was about three weeks before my chin and lip > felt > > normal again. > > when is your post-op sleep study? hope the results are great =), > please let > > me know how it all works out for you. > > and try the cpap after – just to see if it’s easier or more > difficult, more > > effective or less effective. > > good luck. get lots of rest and take care! > > > "Tink" wrote in message > > > news:KeCVc.8968$54.127451@typhoon.sonic.net… > > > > Hi Jeff, > > > > Yes, i am also thrilled that there is a newgroup for this. And > they have > > > > been a tremendous help to me. Read and research and question as > much as > > > you > > > > can (starting with the NG FAQ): > > > > ============================================= > > > > Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep > > > > Newsgroup archives http://www.talhost.net/sleep/archives.htm > > > > ============================================= > > > > before jumping into the surgery route. if you still choose that > route, > > at > > > > least you will be well informed and know what to expect. > > > > from what i understand, UPPP only offers very minimal improvement, > if > > any, > > > > and there are lots of potential complications and side effects (as > noted > > > in > > > > the replys to your post). and if you have severe apnea, it > probably > > won’t > > > > improve things enough to make a difference in how you feel. my > first > > > > suggestion is to find an experienced/reputable sleep doc ASAP. > > > > ask questions and try the suggestions/advise to get used to the > CPAP. > > > > that being said… > > > > i tried CPAP for a YEAR without success or improvement, and > stopped at > > the > > > > point where i should tape my lips shut to stop the CPAP air > pressure > > from > > > > escaping from my mouth (cpap, chin stap, and now tape over my > mouth? > > > no)… > > > > that and i was damn near comatose all the time. my sleep doc > eventually > > > > suggested i might want to consider surgical alternatives and > referred me > > > to > > > > a sleep surgeon. > > > > so i did. the surgeon informed me of the options and the risks and > said > > i > > > > will probably have significant improvement, would hope for the > best, but > > > > offered no guarantees. so i took a huge chance. i got the modified > UPPP > > > (not > > > > because it is standard practice, but because my soft palate and > uvula > > were > > > > low in my throat – almost resting on the base of my tongue), and i > had > > the > > > > genioglossus advancement. the surgeon thought that would be the > most > > > > beneficial approach. > > > > well, i had great results (better than the surgeon had hoped for, > > > actually). > > > > my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed > my > > > > personality changes, but my family and friends say i am a > different > > person > > > > now, calm, relaxed… > > > > i know i still have some apnea (RDI 12), but it’s not so bad now. > i wish > > i > > > > could have got used to the cpap, but i am not sorry i had the > surgery. i > > > do > > > > have some surgery side effects – swallowing felt strange initially > and > > my > > > > lower teeth still have some numbness (from the GTA). i have read > some > > > posts > > > > that the surgery results may be not last, but i feel great at the > > moment, > > > > better than i have felt in many many years, so i am just gonna be > happy > > > > about that. > > > > as far as cpap after surgery.. not only did i tolerate the cpap, > but > > when > > > i > > > > had the post-op sleep study done, they strapped a cpap on me at > 4am > > > (because > > > > i had a few anpeas) and i had REM sleep the entire time on the > cpap! (as > > > to > > > > why i could use the cpap during the sleep study and not at home? > they > > > > strapped it on me when i was asleep, and i had been given a sleep > med as > > > > well – but wow, that cpap does work well if you can sleep get to > sleep > > > with > > > > it) > > > > bottom line, talk to a good, no, great sleep doc, research your > options. > > > > there are a lot of knife happy docs, not many who know shit at > about > > sleep > > > > apnea. > > > > take care and good luck!! > > > > "Jeff" wrote in message > > > > news:6d859c39.0408151908.292aa964@posting.google.com… > > > > > Hello, > > > > > I am ecstatic that there is a newsgroup dedicated to supporting > people > > > > > with sleep apnea! I was diagnosed a year ago with severe OSA. > I am > > > > > convinced that my apnea began at age 13 and now I am 34 going on > 35. > > > > > The results of my sleep tests showed that I stopped breathing 52 > times > > > > > an hour during non REM sleep and 72 times an hour during REM > sleep. > > > > > I have the ResMed S7 CPAP machine and just cannot get used to > it. I > > > > > am thinking of undergoing UPPP surgery, whereby the surgeon > removes > > > > > part of the soft palette and tonsils. I was told that the > success > > > > > rate of this operation is at best 50% and that the OSA may > actually > > > > > get worse after the operation. I am still leaning towards > having this > > > > > operation done because that CPAP has only a very marginal > benefit for > > > > > me. I can usually only sleep part of the night with it on. > > > > > I would like to hear from someone who has had this operation to > see > > > > > whether the apnea was alleviated and if so, to what degree. > Does one > > > > > still have to use the CPAP machine after the operation? How > long did > > > > > it take before the post operative pain disappeared? > > > > > Best Regards, > > > > > Jeff

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Improvement continues. Doc said everything looks good with the GTA surgery and I can feel the results. Almost all feeling has returned to my lower jaw with just some remaining numbness in the lower front teeth which he believes will subside. Wife reports no observed apnea and very little snoring. An inspection of my sinuses revealed that nasal polyps are growing back after being removed 2 years ago. In another year he wants to clean that up again. "Tink" wrote in message

news:RPzYc.10990$54.150727@typhoon.sonic.net… – Hide quoted text — Show quoted text -> how did the post-op visit go? how are you feeling? > glad to hear you are doing well, keep me posted. good luck and take care! > "BruceR" wrote in message > news:HpdWc.32407$xi6.6193@fe2.texas.rr.com… > > I’ll probably schedule the follow up sleep study in about 6 months. > > Tomorrow (Mon), I see the doc for a post surgery checkup. The numbness > > is subsiding and there has been no pain from the procedure at all. > > "Tink" wrote in message > > news:txXVc.9091$54.131372@typhoon.sonic.net… > > > "Bruce Robin" wrote in message > > > news:ItCVc.5618$Jn5.236@fe1.texas.rr.com… > > > > How long has it been since your surgery? I had the UPPP about 18 mos > > ago > > > > with good improvement and the GTA almost 2 weeks ago and that seems > > > > successful so far. I have most of the feeling back in my chin and > > lower > > > lip > > > > and only my lower front teeth remain numb. The numbness subsides a > > little > > > > more each day as the healing continues. > > > hola Bruce, > > > the UPPP and GTA surgery was in October 2003. had the post-op sleep > > study in > > > March 2004. my front lower teeth are still a bit numb. but i am still > > glad i > > > had the surgery. IIRC, it was about three weeks before my chin and lip > > felt > > > normal again. > > > when is your post-op sleep study? hope the results are great =), > > please let > > > me know how it all works out for you. > > > and try the cpap after – just to see if it’s easier or more > > difficult, more > > > effective or less effective. > > > good luck. get lots of rest and take care! > > > > "Tink" wrote in message > > > > news:KeCVc.8968$54.127451@typhoon.sonic.net… > > > > > Hi Jeff, > > > > > Yes, i am also thrilled that there is a newgroup for this. And > > they have > > > > > been a tremendous help to me. Read and research and question as > > much as > > > > you > > > > > can (starting with the NG FAQ): > > > > > ============================================= > > > > > Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep > > > > > Newsgroup archives http://www.talhost.net/sleep/archives.htm > > > > > ============================================= > > > > > before jumping into the surgery route. if you still choose that > > route, > > > at > > > > > least you will be well informed and know what to expect. > > > > > from what i understand, UPPP only offers very minimal improvement, > > if > > > any, > > > > > and there are lots of potential complications and side effects (as > > noted > > > > in > > > > > the replys to your post). and if you have severe apnea, it > > probably > > > won’t > > > > > improve things enough to make a difference in how you feel. my > > first > > > > > suggestion is to find an experienced/reputable sleep doc ASAP. > > > > > ask questions and try the suggestions/advise to get used to the > > CPAP. > > > > > that being said… > > > > > i tried CPAP for a YEAR without success or improvement, and > > stopped at > > > the > > > > > point where i should tape my lips shut to stop the CPAP air > > pressure > > > from > > > > > escaping from my mouth (cpap, chin stap, and now tape over my > > mouth? > > > > no)… > > > > > that and i was damn near comatose all the time. my sleep doc > > eventually > > > > > suggested i might want to consider surgical alternatives and > > referred me > > > > to > > > > > a sleep surgeon. > > > > > so i did. the surgeon informed me of the options and the risks and > > said > > > i > > > > > will probably have significant improvement, would hope for the > > best, but > > > > > offered no guarantees. so i took a huge chance. i got the modified > > UPPP > > > > (not > > > > > because it is standard practice, but because my soft palate and > > uvula > > > were > > > > > low in my throat – almost resting on the base of my tongue), and i > > had > > > the > > > > > genioglossus advancement. the surgeon thought that would be the > > most > > > > > beneficial approach. > > > > > well, i had great results (better than the surgeon had hoped for, > > > > actually). > > > > > my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed > > my > > > > > personality changes, but my family and friends say i am a > > different > > > person > > > > > now, calm, relaxed… > > > > > i know i still have some apnea (RDI 12), but it’s not so bad now. > > i wish > > > i > > > > > could have got used to the cpap, but i am not sorry i had the > > surgery. i > > > > do > > > > > have some surgery side effects – swallowing felt strange initially > > and > > > my > > > > > lower teeth still have some numbness (from the GTA). i have read > > some > > > > posts > > > > > that the surgery results may be not last, but i feel great at the > > > moment, > > > > > better than i have felt in many many years, so i am just gonna be > > happy > > > > > about that. > > > > > as far as cpap after surgery.. not only did i tolerate the cpap, > > but > > > when > > > > i > > > > > had the post-op sleep study done, they strapped a cpap on me at > > 4am > > > > (because > > > > > i had a few anpeas) and i had REM sleep the entire time on the > > cpap! (as > > > > to > > > > > why i could use the cpap during the sleep study and not at home? > > they > > > > > strapped it on me when i was asleep, and i had been given a sleep > > med as > > > > > well – but wow, that cpap does work well if you can sleep get to > > sleep > > > > with > > > > > it) > > > > > bottom line, talk to a good, no, great sleep doc, research your > > options. > > > > > there are a lot of knife happy docs, not many who know shit at > > about > > > sleep > > > > > apnea. > > > > > take care and good luck!! > > > > > "Jeff" wrote in message > > > > > news:6d859c39.0408151908.292aa964@posting.google.com… > > > > > > Hello, > > > > > > I am ecstatic that there is a newsgroup dedicated to supporting > > people > > > > > > with sleep apnea! I was diagnosed a year ago with severe OSA. > > I am > > > > > > convinced that my apnea began at age 13 and now I am 34 going on > > 35. > > > > > > The results of my sleep tests showed that I stopped breathing 52 > > times > > > > > > an hour during non REM sleep and 72 times an hour during REM > > sleep. > > > > > > I have the ResMed S7 CPAP machine and just cannot get used to > > it. I > > > > > > am thinking of undergoing UPPP surgery, whereby the surgeon > > removes > > > > > > part of the soft palette and tonsils. I was told that the > > success > > > > > > rate of this operation is at best 50% and that the OSA may > > actually > > > > > > get worse after the operation. I am still leaning towards > > having this > > > > > > operation done because that CPAP has only a very marginal > > benefit for > > > > > > me. I can usually only sleep part of the night with it on. > > > > > > I would like to hear from someone who has had this operation to > > see > > > > > > whether the apnea was alleviated and if so, to what degree. > > Does one > > > > > > still have to use the CPAP machine after the operation? How > > long did > > > > > > it take before the post operative pain disappeared? > > > > > > Best Regards, > > > > > > Jeff

Response:

I totally agree with what has been said in this post Jeff, i had the laser treatment years ago ( when i was 32 to be precise i am now 43 ) to thin my top pallet down to try & stop my snoring, it never really helped my situation. Then earlier on this year CPAP came along, and i have the same machine as you, a resmed S7 with the Mirage Full Face Mask Series 2 you need to persevere with it Jeff, it certainly helped me out. When i went back for a review a few weeks back the Consultant at the Freeman Hospital Lung Function was pleased that CPAP was working for me as he only used surgery as a last resort. I hopes this helps in any way Jeff. Doug Quack Quack Kate :O) "Jeff" wrote in message

news:6d859c39.0408151908.292aa964@posting.google.com… – Hide quoted text — Show quoted text -> Hello, > I am ecstatic that there is a newsgroup dedicated to supporting people > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > convinced that my apnea began at age 13 and now I am 34 going on 35. > The results of my sleep tests showed that I stopped breathing 52 times > an hour during non REM sleep and 72 times an hour during REM sleep. > I have the ResMed S7 CPAP machine and just cannot get used to it. I > am thinking of undergoing UPPP surgery, whereby the surgeon removes > part of the soft palette and tonsils. I was told that the success > rate of this operation is at best 50% and that the OSA may actually > get worse after the operation. I am still leaning towards having this > operation done because that CPAP has only a very marginal benefit for > me. I can usually only sleep part of the night with it on. > I would like to hear from someone who has had this operation to see > whether the apnea was alleviated and if so, to what degree. Does one > still have to use the CPAP machine after the operation? How long did > it take before the post operative pain disappeared? > Best Regards, > Jeff

Response:

Hi Jeff and welcome, "Jeff" wrote in message

news:6d859c39.0408151908.292aa964@posting.google.com… > Hello, > I am ecstatic that there is a newsgroup dedicated to supporting people > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > convinced that my apnea began at age 13 and now I am 34 going on 35. > The results of my sleep tests showed that I stopped breathing 52 times > an hour during non REM sleep and 72 times an hour during REM sleep. > I have the ResMed S7 CPAP machine and just cannot get used to it. I > am thinking of undergoing UPPP surgery, whereby the surgeon removes > part of the soft palette and tonsils. I was told that the success > rate of this operation is at best 50% and that the OSA may actually > get worse after the operation.

Figures are actually a 50% improvement in 50% of the cases. Surgeons say that an ‘improvement’ is a reduction in apnoea events, so technically if your events are reduced in any way by a UPPP then you are classed as a success……………..despite the fact that in your case a full 50% reduction will still mean that you will have to use cpap post operatively. I am still leaning towards having this > operation done because that CPAP has only a very marginal benefit for > me. I can usually only sleep part of the night with it on.

Not a good idea, as UPPP on its own will not cure you. There is also a danger that if the surgeon cuts too much (as often happens) you may not be able to use cpap post operatively because of an inability to create a seal due to the removal of tissue. > I would like to hear from someone who has had this operation to see > whether the apnea was alleviated and if so, to what degree. Does one > still have to use the CPAP machine after the operation? How long did > it take before the post operative pain disappeared?

I had the UPPP as far back as 1994. It’s barbaric surgery and in Ireland it is now seldom if ever used to treat sleep apnoea because of its dismal success rates. Post operative pain took me a number of weeks to disappear, however the swelling can remain and is uncomfortable. UPPP is the oldest form of surgery to attempt to cure sleep apnoea. It is also the least effective. In my case the improvement lasted for 2/3 months, but my apnoea returned, I believe, more severely. Thankfully I was able to use cpap. CPAP is not easy, but it does work. You have to be bloody minded as regards the mask and persevere. In the support group I help with we have a saying ‘Obstructive Sleep Apnoea is a disorder (not an illness), disorders cannot be cured, but they can be managed successfully’. This helps people get it into their heads that they are probably facing this problem for the rest of their lives and that there are no quick fixes. Obviously some people can be ‘cured’ but usually only those with mild apnoea. I wish you well, but UPPP will not work with the number of apnoea events you are experiencing. Even with a 50% improvement you are still looking at CPAP, and your surgeon has another ’success’ to boast about. Don’t be afraid to ask for help here. Dan.

Response:

I’ll probably schedule the follow up sleep study in about 6 months. Tomorrow (Mon), I see the doc for a post surgery checkup. The numbness is subsiding and there has been no pain from the procedure at all. "Tink" wrote in message

news:txXVc.9091$54.131372@typhoon.sonic.net… – Hide quoted text — Show quoted text -> "Bruce Robin" wrote in message > news:ItCVc.5618$Jn5.236@fe1.texas.rr.com… > > How long has it been since your surgery? I had the UPPP about 18 mos ago > > with good improvement and the GTA almost 2 weeks ago and that seems > > successful so far. I have most of the feeling back in my chin and lower > lip > > and only my lower front teeth remain numb. The numbness subsides a little > > more each day as the healing continues. > hola Bruce, > the UPPP and GTA surgery was in October 2003. had the post-op sleep study in > March 2004. my front lower teeth are still a bit numb. but i am still glad i > had the surgery. IIRC, it was about three weeks before my chin and lip felt > normal again. > when is your post-op sleep study? hope the results are great =), please let > me know how it all works out for you. > and try the cpap after – just to see if it’s easier or more difficult, more > effective or less effective. > good luck. get lots of rest and take care! > > "Tink" wrote in message > > news:KeCVc.8968$54.127451@typhoon.sonic.net… > > > Hi Jeff, > > > Yes, i am also thrilled that there is a newgroup for this. And they have > > > been a tremendous help to me. Read and research and question as much as > > you > > > can (starting with the NG FAQ): > > > ============================================= > > > Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep > > > Newsgroup archives http://www.talhost.net/sleep/archives.htm > > > ============================================= > > > before jumping into the surgery route. if you still choose that route, > at > > > least you will be well informed and know what to expect. > > > from what i understand, UPPP only offers very minimal improvement, if > any, > > > and there are lots of potential complications and side effects (as noted > > in > > > the replys to your post). and if you have severe apnea, it probably > won’t > > > improve things enough to make a difference in how you feel. my first > > > suggestion is to find an experienced/reputable sleep doc ASAP. > > > ask questions and try the suggestions/advise to get used to the CPAP. > > > that being said… > > > i tried CPAP for a YEAR without success or improvement, and stopped at > the > > > point where i should tape my lips shut to stop the CPAP air pressure > from > > > escaping from my mouth (cpap, chin stap, and now tape over my mouth? > > no)… > > > that and i was damn near comatose all the time. my sleep doc eventually > > > suggested i might want to consider surgical alternatives and referred me > > to > > > a sleep surgeon. > > > so i did. the surgeon informed me of the options and the risks and said > i > > > will probably have significant improvement, would hope for the best, but > > > offered no guarantees. so i took a huge chance. i got the modified UPPP > > (not > > > because it is standard practice, but because my soft palate and uvula > were > > > low in my throat – almost resting on the base of my tongue), and i had > the > > > genioglossus advancement. the surgeon thought that would be the most > > > beneficial approach. > > > well, i had great results (better than the surgeon had hoped for, > > actually). > > > my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed my > > > personality changes, but my family and friends say i am a different > person > > > now, calm, relaxed… > > > i know i still have some apnea (RDI 12), but it’s not so bad now. i wish > i > > > could have got used to the cpap, but i am not sorry i had the surgery. i > > do > > > have some surgery side effects – swallowing felt strange initially and > my > > > lower teeth still have some numbness (from the GTA). i have read some > > posts > > > that the surgery results may be not last, but i feel great at the > moment, > > > better than i have felt in many many years, so i am just gonna be happy > > > about that. > > > as far as cpap after surgery.. not only did i tolerate the cpap, but > when > > i > > > had the post-op sleep study done, they strapped a cpap on me at 4am > > (because > > > i had a few anpeas) and i had REM sleep the entire time on the cpap! (as > > to > > > why i could use the cpap during the sleep study and not at home? they > > > strapped it on me when i was asleep, and i had been given a sleep med as > > > well – but wow, that cpap does work well if you can sleep get to sleep > > with > > > it) > > > bottom line, talk to a good, no, great sleep doc, research your options. > > > there are a lot of knife happy docs, not many who know shit at about > sleep > > > apnea. > > > take care and good luck!! > > > "Jeff" wrote in message > > > news:6d859c39.0408151908.292aa964@posting.google.com… > > > > Hello, > > > > I am ecstatic that there is a newsgroup dedicated to supporting people > > > > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > > > > convinced that my apnea began at age 13 and now I am 34 going on 35. > > > > The results of my sleep tests showed that I stopped breathing 52 times > > > > an hour during non REM sleep and 72 times an hour during REM sleep. > > > > I have the ResMed S7 CPAP machine and just cannot get used to it. I > > > > am thinking of undergoing UPPP surgery, whereby the surgeon removes > > > > part of the soft palette and tonsils. I was told that the success > > > > rate of this operation is at best 50% and that the OSA may actually > > > > get worse after the operation. I am still leaning towards having this > > > > operation done because that CPAP has only a very marginal benefit for > > > > me. I can usually only sleep part of the night with it on. > > > > I would like to hear from someone who has had this operation to see > > > > whether the apnea was alleviated and if so, to what degree. Does one > > > > still have to use the CPAP machine after the operation? How long did > > > > it take before the post operative pain disappeared? > > > > Best Regards, > > > > Jeff

Response:

Hi Jeff, Yes, i am also thrilled that there is a newgroup for this. And they have been a tremendous help to me. Read and research and question as much as you can (starting with the NG FAQ): ============================================= Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep Newsgroup archives http://www.talhost.net/sleep/archives.htm ============================================= before jumping into the surgery route. if you still choose that route, at least you will be well informed and know what to expect. from what i understand, UPPP only offers very minimal improvement, if any, and there are lots of potential complications and side effects (as noted in the replys to your post). and if you have severe apnea, it probably won’t improve things enough to make a difference in how you feel. my first suggestion is to find an experienced/reputable sleep doc ASAP. ask questions and try the suggestions/advise to get used to the CPAP. that being said… i tried CPAP for a YEAR without success or improvement, and stopped at the point where i should tape my lips shut to stop the CPAP air pressure from escaping from my mouth (cpap, chin stap, and now tape over my mouth? no)… that and i was damn near comatose all the time. my sleep doc eventually suggested i might want to consider surgical alternatives and referred me to a sleep surgeon. so i did. the surgeon informed me of the options and the risks and said i will probably have significant improvement, would hope for the best, but offered no guarantees. so i took a huge chance. i got the modified UPPP (not because it is standard practice, but because my soft palate and uvula were low in my throat – almost resting on the base of my tongue), and i had the genioglossus advancement. the surgeon thought that would be the most beneficial approach. well, i had great results (better than the surgeon had hoped for, actually). my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed my personality changes, but my family and friends say i am a different person now, calm, relaxed… i know i still have some apnea (RDI 12), but it’s not so bad now. i wish i could have got used to the cpap, but i am not sorry i had the surgery. i do have some surgery side effects – swallowing felt strange initially and my lower teeth still have some numbness (from the GTA). i have read some posts that the surgery results may be not last, but i feel great at the moment, better than i have felt in many many years, so i am just gonna be happy about that. as far as cpap after surgery.. not only did i tolerate the cpap, but when i had the post-op sleep study done, they strapped a cpap on me at 4am (because i had a few anpeas) and i had REM sleep the entire time on the cpap! (as to why i could use the cpap during the sleep study and not at home? they strapped it on me when i was asleep, and i had been given a sleep med as well – but wow, that cpap does work well if you can sleep get to sleep with it) bottom line, talk to a good, no, great sleep doc, research your options. there are a lot of knife happy docs, not many who know shit at about sleep apnea. take care and good luck!! "Jeff" wrote in message

Response:

How long has it been since your surgery? I had the UPPP about 18 mos ago with good improvement and the GTA almost 2 weeks ago and that seems successful so far. I have most of the feeling back in my chin and lower lip and only my lower front teeth remain numb. The numbness subsides a little more each day as the healing continues. "Tink" wrote in message

news:KeCVc.8968$54.127451@typhoon.sonic.net… – Hide quoted text — Show quoted text -> Hi Jeff, > Yes, i am also thrilled that there is a newgroup for this. And they have > been a tremendous help to me. Read and research and question as much as you > can (starting with the NG FAQ): > ============================================= > Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep > Newsgroup archives http://www.talhost.net/sleep/archives.htm > ============================================= > before jumping into the surgery route. if you still choose that route, at > least you will be well informed and know what to expect. > from what i understand, UPPP only offers very minimal improvement, if any, > and there are lots of potential complications and side effects (as noted in > the replys to your post). and if you have severe apnea, it probably won’t > improve things enough to make a difference in how you feel. my first > suggestion is to find an experienced/reputable sleep doc ASAP. > ask questions and try the suggestions/advise to get used to the CPAP. > that being said… > i tried CPAP for a YEAR without success or improvement, and stopped at the > point where i should tape my lips shut to stop the CPAP air pressure from > escaping from my mouth (cpap, chin stap, and now tape over my mouth? no)… > that and i was damn near comatose all the time. my sleep doc eventually > suggested i might want to consider surgical alternatives and referred me to > a sleep surgeon. > so i did. the surgeon informed me of the options and the risks and said i > will probably have significant improvement, would hope for the best, but > offered no guarantees. so i took a huge chance. i got the modified UPPP (not > because it is standard practice, but because my soft palate and uvula were > low in my throat – almost resting on the base of my tongue), and i had the > genioglossus advancement. the surgeon thought that would be the most > beneficial approach. > well, i had great results (better than the surgeon had hoped for, actually). > my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed my > personality changes, but my family and friends say i am a different person > now, calm, relaxed… > i know i still have some apnea (RDI 12), but it’s not so bad now. i wish i > could have got used to the cpap, but i am not sorry i had the surgery. i do > have some surgery side effects – swallowing felt strange initially and my > lower teeth still have some numbness (from the GTA). i have read some posts > that the surgery results may be not last, but i feel great at the moment, > better than i have felt in many many years, so i am just gonna be happy > about that. > as far as cpap after surgery.. not only did i tolerate the cpap, but when i > had the post-op sleep study done, they strapped a cpap on me at 4am (because > i had a few anpeas) and i had REM sleep the entire time on the cpap! (as to > why i could use the cpap during the sleep study and not at home? they > strapped it on me when i was asleep, and i had been given a sleep med as > well – but wow, that cpap does work well if you can sleep get to sleep with > it) > bottom line, talk to a good, no, great sleep doc, research your options. > there are a lot of knife happy docs, not many who know shit at about sleep > apnea. > take care and good luck!! > "Jeff" wrote in message > news:6d859c39.0408151908.292aa964@posting.google.com… > > Hello, > > I am ecstatic that there is a newsgroup dedicated to supporting people > > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > > convinced that my apnea began at age 13 and now I am 34 going on 35. > > The results of my sleep tests showed that I stopped breathing 52 times > > an hour during non REM sleep and 72 times an hour during REM sleep. > > I have the ResMed S7 CPAP machine and just cannot get used to it. I > > am thinking of undergoing UPPP surgery, whereby the surgeon removes > > part of the soft palette and tonsils. I was told that the success > > rate of this operation is at best 50% and that the OSA may actually > > get worse after the operation. I am still leaning towards having this > > operation done because that CPAP has only a very marginal benefit for > > me. I can usually only sleep part of the night with it on. > > I would like to hear from someone who has had this operation to see > > whether the apnea was alleviated and if so, to what degree. Does one > > still have to use the CPAP machine after the operation? How long did > > it take before the post operative pain disappeared? > > Best Regards, > > Jeff

Response:

I had this surgery last fall, and also had my tonsils removed at the same time. For years, I had been saying that I needed my tonsils removed. I went to an ear, nose & throat Dr. who said they could come out, but didn’t need to. I pressed for surgery. They did that and also the APPP at the same time. It was the worst week of my life after that. I could barely swallow the liquid Tylenol 3 they gave me, and popsicles were too difficult to eat! I became dehydrated despite my best efforts to eat ice chips, and ended up in the hospital overnight. However, if I had to go through it again, I would in a minute. Prior to that, I had this yellow-crap that would get caught in my tonsils and would actually have to poke it out. I could feel something in my throat, and would choke often. After drinking water, I would ‘burp’ some back up, and it was clean water – obviously getting stuck somewhere in my throat. I had been using 20-30 sick days/yr. for the past few years. I still use CPAP, but my overall condition is much improved. No more sore throats, strep-throat, sour-throat. Everything healed well, and I’m almost 11 months without a single sick day! I can breathe easier, and this constant feeling of having something stuck in my throat is gone. Incidentally, after the surgery the Dr. said they were the largest tonsils that he had seen, and had great difficulty in removing them. They were very deep and went down my throat. They were covered in scar tissue from old infections, and he said it was a good thing to get rid of them. He thought that I likely always had a low-grade infection from them. The procedure may not remove your need for a CPAP, but it might help it become more efficient! From my personal experience, I would recommend the APPP. However, your situation is different than mine. Just remember that you may not rid yourself of CPAP, but it might work better. If you do go through with the surgery, hang in there! A week of pain is worth it in the long run. "Jeff" wrote in message

Response:

"Bruce Robin" wrote in message

news:ItCVc.5618$Jn5.236@fe1.texas.rr.com… > How long has it been since your surgery? I had the UPPP about 18 mos ago > with good improvement and the GTA almost 2 weeks ago and that seems > successful so far. I have most of the feeling back in my chin and lower lip > and only my lower front teeth remain numb. The numbness subsides a little > more each day as the healing continues.

hola Bruce, the UPPP and GTA surgery was in October 2003. had the post-op sleep study in March 2004. my front lower teeth are still a bit numb. but i am still glad i had the surgery. IIRC, it was about three weeks before my chin and lip felt normal again. when is your post-op sleep study? hope the results are great =), please let me know how it all works out for you. and try the cpap after – just to see if it’s easier or more difficult, more effective or less effective. good luck. get lots of rest and take care! – Hide quoted text — Show quoted text -> "Tink" wrote in message > news:KeCVc.8968$54.127451@typhoon.sonic.net… > > Hi Jeff, > > Yes, i am also thrilled that there is a newgroup for this. And they have > > been a tremendous help to me. Read and research and question as much as > you > > can (starting with the NG FAQ): > > ============================================= > > Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep > > Newsgroup archives http://www.talhost.net/sleep/archives.htm > > ============================================= > > before jumping into the surgery route. if you still choose that route, at > > least you will be well informed and know what to expect. > > from what i understand, UPPP only offers very minimal improvement, if any, > > and there are lots of potential complications and side effects (as noted > in > > the replys to your post). and if you have severe apnea, it probably won’t > > improve things enough to make a difference in how you feel. my first > > suggestion is to find an experienced/reputable sleep doc ASAP. > > ask questions and try the suggestions/advise to get used to the CPAP. > > that being said… > > i tried CPAP for a YEAR without success or improvement, and stopped at the > > point where i should tape my lips shut to stop the CPAP air pressure from > > escaping from my mouth (cpap, chin stap, and now tape over my mouth? > no)… > > that and i was damn near comatose all the time. my sleep doc eventually > > suggested i might want to consider surgical alternatives and referred me > to > > a sleep surgeon. > > so i did. the surgeon informed me of the options and the risks and said i > > will probably have significant improvement, would hope for the best, but > > offered no guarantees. so i took a huge chance. i got the modified UPPP > (not > > because it is standard practice, but because my soft palate and uvula were > > low in my throat – almost resting on the base of my tongue), and i had the > > genioglossus advancement. the surgeon thought that would be the most > > beneficial approach. > > well, i had great results (better than the surgeon had hoped for, > actually). > > my RDI’s went from 96 to 12. i feel fantastic. i haven’t noticed my > > personality changes, but my family and friends say i am a different person > > now, calm, relaxed… > > i know i still have some apnea (RDI 12), but it’s not so bad now. i wish i > > could have got used to the cpap, but i am not sorry i had the surgery. i > do > > have some surgery side effects – swallowing felt strange initially and my > > lower teeth still have some numbness (from the GTA). i have read some > posts > > that the surgery results may be not last, but i feel great at the moment, > > better than i have felt in many many years, so i am just gonna be happy > > about that. > > as far as cpap after surgery.. not only did i tolerate the cpap, but when > i > > had the post-op sleep study done, they strapped a cpap on me at 4am > (because > > i had a few anpeas) and i had REM sleep the entire time on the cpap! (as > to > > why i could use the cpap during the sleep study and not at home? they > > strapped it on me when i was asleep, and i had been given a sleep med as > > well – but wow, that cpap does work well if you can sleep get to sleep > with > > it) > > bottom line, talk to a good, no, great sleep doc, research your options. > > there are a lot of knife happy docs, not many who know shit at about sleep > > apnea. > > take care and good luck!! > > "Jeff" wrote in message > > news:6d859c39.0408151908.292aa964@posting.google.com… > > > Hello, > > > I am ecstatic that there is a newsgroup dedicated to supporting people > > > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > > > convinced that my apnea began at age 13 and now I am 34 going on 35. > > > The results of my sleep tests showed that I stopped breathing 52 times > > > an hour during non REM sleep and 72 times an hour during REM sleep. > > > I have the ResMed S7 CPAP machine and just cannot get used to it. I > > > am thinking of undergoing UPPP surgery, whereby the surgeon removes > > > part of the soft palette and tonsils. I was told that the success > > > rate of this operation is at best 50% and that the OSA may actually > > > get worse after the operation. I am still leaning towards having this > > > operation done because that CPAP has only a very marginal benefit for > > > me. I can usually only sleep part of the night with it on. > > > I would like to hear from someone who has had this operation to see > > > whether the apnea was alleviated and if so, to what degree. Does one > > > still have to use the CPAP machine after the operation? How long did > > > it take before the post operative pain disappeared? > > > Best Regards, > > > Jeff

Response:

some points, Jeff 1. the success rate of 50% is very high for your Dr’s practice…… overall the success rate is lower than that 2. my sleep apnea is CAUSED by a very similar procedure (removal of the uvula soft tissue, tonsils, etc) for another problem i had (which just recurred anyway) 3. it take stubborn pig headed muleness to adjust to the mask on your face at night….. or at least it did for me… others take to it like a duck to water………… do you have a mask alert function that will tell you when the mask has ‘magically levitated’ off your face????/ then calmly put the mask back on and hit the ramp button again……… it takes time, but you CAN do it! 4. within less than 5 years, most people who have the surgery are facing CPAP treatment again OR they are going for a trach operation good luck with whatever you choose kate – Hide quoted text — Show quoted text -"Jeff" wrote in message .com… > Hello, > I am ecstatic that there is a newsgroup dedicated to supporting people > with sleep apnea! I was diagnosed a year ago with severe OSA. I am > convinced that my apnea began at age 13 and now I am 34 going on 35. > The results of my sleep tests showed that I stopped breathing 52 times > an hour during non REM sleep and 72 times an hour during REM sleep. > I have the ResMed S7 CPAP machine and just cannot get used to it. I > am thinking of undergoing UPPP surgery, whereby the surgeon removes > part of the soft palette and tonsils. I was told that the success > rate of this operation is at best 50% and that the OSA may actually > get worse after the operation. I am still leaning towards having this > operation done because that CPAP has only a very marginal benefit for > me. I can usually only sleep part of the night with it on. > I would like to hear from someone who has had this operation to see > whether the apnea was alleviated and if so, to what degree. Does one > still have to use the CPAP machine after the operation? How long did > it take before the post operative pain disappeared? > Best Regards, > Jeff

Response:

I had a UPPP, tonsilectomy (they grew back after childhood removal) and removal of nasal polyps/correction of deviated septum about 18 months ago. The results were significant. My apnea episodes were reduced to only occuring during REM sleep, snoring was reduced by about 50% and I felt great. No drifting off during the day or waking up tired. That said, based on the continued apnea during REM sleep, my doctor suggested a genioglossus tongue advancement which I had done last Tuesday. A Hyoid Suspension was not indicated as my hyoid bone is already far forward. Although I’m still recuperating (painlessly) from the procedure, my wife reports that the operation seems to have provided additional relief in that I’m not snoring at all when in bed. She reported "heavy breathing/minor snoring" when I fell asleep in the recliner yesterday. As posted elsewhere, I will update the group as time goes on and my mouth has fully healed. Regarding long term post op side effects of the UPPP, there were none for me. No holes in my throat, no change in taste or difficulty swallowing. Initially, there was some learning curve on swallowing. I found that it was easy to inhale while eating and suck something down the wrong pipe. I either learned to deal with this automatically or the condition resolved itself over time. The biggest benefit was the removal of nasal polyps. Breathing through my nose is just so much easier – like jet engine intakes now! As with any surgical procedure, choice of surgeon is of paramount importance. Mine was done in Houston by Dr. Charles Katz of The Texas Medical Center (St. Lukes) who I highly recommend. Although I could have had it done locally in Honolulu, I was impressed with his skills and the technology used there. "Jeff" wrote in message

Response:

> I would like to hear from someone who has had this operation to see > whether the apnea was alleviated and if so, to what degree. Does one > still have to use the CPAP machine after the operation? How long did > it take before the post operative pain disappeared?

there are some things that can help you adjust to CPAP – if you explain what problems you’re having we may be able to help you. Wouldn’t recommend the surgery in a million years! — Beth in Australia (I am not a qualified medical professional and unless I quote sources anything posted by me is my opinion only and you should always check with your doctor) ============================================= Sleep Disorders Newsgroup FAQ Website http://talhost.net/sleep Newsgroup archives http://www.talhost.net/sleep/archives.htm =============================================

Response:

"Jeff" wrote in message

That’s a lie someone told you. The success rate of the operation is less than 25% and of the success cases, almost all get less than 40% relief from sleep apnea. Of those who do get relief, more often than not the fat grows back. In every case there is the chance that you will lose your ability to swallow properly, have holes in the back of your throat that food gets in to and you need to stick your finger in to get out and some have lost their sense of taste. All in all, if someone is telling you to get that operation, they are telling you the wrong thing. Stick with the CPAP as long as you can and if no good, talk to the doctor about a tracheostomy. It is the only operation worth considering, is totally reversible and leaves you with no bad side effects. No other surgery is worth considering for sleep apnea.

Response:

Hello, I am ecstatic that there is a newsgroup dedicated to supporting people with sleep apnea! I was diagnosed a year ago with severe OSA. I am convinced that my apnea began at age 13 and now I am 34 going on 35. The results of my sleep tests showed that I stopped breathing 52 times an hour during non REM sleep and 72 times an hour during REM sleep. I have the ResMed S7 CPAP machine and just cannot get used to it. I am thinking of undergoing UPPP surgery, whereby the surgeon removes part of the soft palette and tonsils. I was told that the success rate of this operation is at best 50% and that the OSA may actually get worse after the operation. I am still leaning towards having this operation done because that CPAP has only a very marginal benefit for me. I can usually only sleep part of the night with it on. I would like to hear from someone who has had this operation to see whether the apnea was alleviated and if so, to what degree. Does one still have to use the CPAP machine after the operation? How long did it take before the post operative pain disappeared? Best Regards, Jeff

Response:

Apnea treatment questions

admin — Tue, 20 Jul 2004 00:00:00 +0000

Question:

"Andy Hall" wrote in message > Regarding (B) do you ever notice night sweating or anything giving a > clue of that?

No > Your diagnosis from the hospital is moderate apnoea, as they say so > should be treated. > C) is a lot. Are you noticing any heart arrythmia? It culd be > that this is your way to keep awake. FOr others it’s sugary foods and > an insulin roller coaster.

No arrhythmia, though when I wake from an afternoon nap my heart is often racing, for reasons that are unknown to me. Insulin – I’m a pretty stable here as I follow the low carb thing pretty religiously. No doubt that coffee serves as a "stay-awake" for me, which is why I often make a pot in the afternoon. Thanks, other replies/input much appreciated

Response:

"Andy Hall" wrote in message

news:trbrf05dbi5mf2lqq9p239qef8su0uhaiq@4ax.com… > Can you get a referral to a pulmonologist or sleep specialist? You > would be better off trying CPAP first (rent one) and then go for MAD > if needed. I think that your dentist is right in discouraging you > until you have tried other routes.

I called Blue Cross today and asked for a local participating sleep specialist, but the person on the other end wasn’t much help. Would such an MD just be called a "sleep specialist", or is there a more formal name for the specialization that I can give to help Blue Cross locate somebody for me?

Response:

On Tue, 20 Jul 2004 22:25:03 -0600, mikeg wrote: >I called Blue Cross today and asked for a local participating >sleep specialist, but the person on the other end wasn’t much >help. >Would such an MD just be called a "sleep specialist", or is there >a more formal name for the specialization that I can give to help >Blue Cross locate somebody for me?

To map "sleep specialist" to an ABMS specialty, it would probably be "pulminologist." ENTs also work sleep problems to some extent, but they have a habit of being pro-surgery.

Response:

On Tue, 20 Jul 2004 18:33:01 -0600, "mikeg" – Hide quoted text — Show quoted text - wrote: >"Andy Hall" wrote in message >> Regarding (B) do you ever notice night sweating or anything >giving a >> clue of that? >No >> Your diagnosis from the hospital is moderate apnoea, as they say >so >> should be treated. >> C) is a lot. Are you noticing any heart arrythmia? It culd >be >> that this is your way to keep awake. FOr others it’s sugary >foods and >> an insulin roller coaster. >No arrhythmia, though when I wake from an afternoon nap my heart >is often racing, for reasons that are unknown to me.

That can be an effect of caffeine but also that the body has been under stress from struggling with apnoea events. >Insulin – I’m a pretty stable here as I follow the low carb thing >pretty religiously. No doubt that coffee serves as a "stay-awake" >for me, which is why I often make a pot in the afternoon. >Thanks, other replies/input much appreciated

You’re welcome. If you have difficulty finding the right help, then do post back. .andy To email, substitute .nospam with .gl

Response:

Because my doctors erroneously thought I was narcoleptic (I never have been), I was sent to a sleep neurologist, who diagnosed my obstructive sleep apnea. "Charlie Perrin" wrote in message

news:c1urf0da1m8kvk8r9ent7p5njlhb9dbvht@4ax.com… – Hide quoted text — Show quoted text -> On Tue, 20 Jul 2004 22:25:03 -0600, mikeg wrote: > >I called Blue Cross today and asked for a local participating > >sleep specialist, but the person on the other end wasn’t much > >help. > >Would such an MD just be called a "sleep specialist", or is there > >a more formal name for the specialization that I can give to help > >Blue Cross locate somebody for me? > To map "sleep specialist" to an ABMS specialty, it would probably be > "pulminologist." > ENTs also work sleep problems to some extent, but they have a habit of > being pro-surgery.

Response:

On Wed, 21 Jul 2004 23:12:36 -0400, Gary Rimar wrote: >Because my doctors erroneously thought I was narcoleptic (I never >have been), I was sent to a sleep neurologist, who diagnosed my >obstructive sleep apnea.

My experience is that primary care doctors do three things: #1 – Work the easy cases #2 – Tell you what type of specialist does the hard cases #3 – Make sure the drugs the specialists prescribe don’t fry your bone marrow, kidneys, and/or liver.

Response:

On Tue, 20 Jul 2004 16:59:06 -0600, "mikeg" – Hide quoted text — Show quoted text - wrote: >"mikeg" wrote in message >news:wr6dnWySzKDIPGDdRVn-hg@comcast.com… > >Also, >A) I fall asleep easily, though I usually don’t go to bed until >12:30 – 1 am, wake at 6 – 8 am. >B) I sleep through the night without (consciously) waking >C) I am a coffee junkie; 20 oz in the morning, and often 32 – 40 >oz a day. Think STRONG coffee. >HTH >Mike

A) is not necessarily a problem. Regarding (B) do you ever notice night sweating or anything giving a clue of that? Your diagnosis from the hospital is moderate apnoea, as they say so should be treated. C) is a lot. Are you noticing any heart arrythmia? It culd be that this is your way to keep awake. FOr others it’s sugary foods and an insulin roller coaster. There may be other sleep issues, but it would be sensible to address the OSA first. .andy To email, substitute .nospam with .gl

Response:

"mikeg" wrote in message

news:wr6dnWySzKDIPGDdRVn-hg@comcast.com… Also, A) I fall asleep easily, though I usually don’t go to bed until 12:30 – 1 am, wake at 6 – 8 am. B) I sleep through the night without (consciously) waking C) I am a coffee junkie; 20 oz in the morning, and often 32 – 40 oz a day. Think STRONG coffee. HTH Mike

Response:

On Tue, 20 Jul 2004 16:48:44 -0600, "mikeg" wrote: >First post here. >I did the overnight sleep test in the hospital, results reflected >"moderate" apnea. I had a hard time sleeping that night and >logged only 231 minutes of sleep, during which time they recorded >55 anomalies in my breathing. >My GP Md. doesn’t seem to know much about apnea treatment. He >asked me to be fitted with a Mandibular repositioning device – if >that doesn’t work after 30 days he will prescribe CPAP. >He referred me to my Dentist (a good friend of mine), who advises >that these repositioning devices are nothing more than an "income >center" for dentists and that they seldom work. He said he >wouldn’t care to fit me for one.

Can you get a referral to a pulmonologist or sleep specialist? You would be better off trying CPAP first (rent one) and then go for MAD if needed. I think that your dentist is right in discouraging you until you have tried other routes. .andy To email, substitute .nospam with .gl

Response:

First post here. I did the overnight sleep test in the hospital, results reflected "moderate" apnea. I had a hard time sleeping that night and logged only 231 minutes of sleep, during which time they recorded 55 anomalies in my breathing. My GP Md. doesn’t seem to know much about apnea treatment. He asked me to be fitted with a Mandibular repositioning device – if that doesn’t work after 30 days he will prescribe CPAP. He referred me to my Dentist (a good friend of mine), who advises that these repositioning devices are nothing more than an "income center" for dentists and that they seldom work. He said he wouldn’t care to fit me for one. I’ve googled Usenet on the topic and the results seem to agree with his observation as to their effectiveness. I should mention that I have had tongue thrust my whole life, so I suspect that my apnea would be of the obstructive variety. I’m not eager to use CPAP either, but will accept it if need be. I’m worthless in the morning, and often disoriented and semi-dizzy after naps. I’d love to feel better again. Info: 41 YO male 5′5"; 225 lbs (have lost 30 lbs since Feb ‘04) Daily strenuous exercise including weight lifting and bike riding No meds Recent bloodwork indicated normal range for cholesterol etc, etc. No other physical ailments Travel weekly for my job, plenty of nights in hotels. Sincere thanks for any help/opinions here. My reply address is munged, so please reply to the board. mike