really sick of this
Question:
Tom Devlin wrote:
: That’s awfully surprising, and very disappointing. I’ve heard : absolutely nothing but praise for Swedish, I’d make sure that your : sleep doctor knows that there’s a problem. yeah, the center itself has been great. the attached dme has been okay, except for freaking me out about the o2 and the second guy warning me off the ng. the doctors and respiratory techs at the sleep institute were amazingly cool and professional. : Was the window open? You may need another layer of insulation. I’ve : also wrapped my (quilt batting covered) hoses with Saran Wrap to keep : breezes from blowing through the batting. closed, but thin and we keep the heat down at night. i’ve found an old dead floor lamp that seems to work better. some condensation, but not much. i’m ordering a hose cozy so that should resolve that. : Don’t worry about it. Really, we understand. : Just keep plugging… i’m still having a hard time getting a seal with the damned mask. would saline gel or something help with that? it takes me several tries and a lot of tweaking to get a seal, and even then pushing on it at all makes it leak. i am getting 6 or 7 hours a night on it, and sometimes more. i had seven and a half on it last night, but now i have a horrible headache and i fell asleep getting ready for work again. — deb who considered decapitation to get rid of this headache, but decided the side effects weren’t tolerable.
Response:
in article 1110319061.226025@yasure, sine nomine at ll…@drizzle.com wrote on 3/8/05 2:57 PM: > i’m still having a hard time getting a seal with the damned > mask. would saline gel or something help with that? it takes me > several tries and a lot of tweaking to get a seal, and even then > pushing on it at all makes it leak.
I like Ayr saline gel for my damned nasal pillows and see no reason why it wouldn’t help your damned mask. I have had times when I had a panic like reaction to my CPAP treatment. I borrowed from my ancient natural childbirth training and concentrated on my breathing. All right, count slowly to three while inhaling, one, two, three, ok that worked. Now slowly count to three while exhaling, etc. For me it seemed to get the air and the breathing somehow resolved and aligned, if that makes any sense. The children are now in their 30’s. I’ve also used this while having my teeth cleaned. Good luck. Anna
Response:
sine nomine <ll…@drizzle.com> wrote: >: That’s awfully surprising, and very disappointing. I’ve heard >: absolutely nothing but praise for Swedish, I’d make sure that your >: sleep doctor knows that there’s a problem. >yeah, the center itself has been great. the attached dme has been >okay, except for freaking me out about the o2
He may have been trying to frighten you into compliance. It probably works for some people. > and the second guy warning me off the ng.
I’d really like to know which group(s) he had in mind. >: Was the window open? You may need another layer of insulation. I’ve >closed, but thin and we keep the heat down at night. i’ve found an old >dead floor lamp that seems to work better. some condensation, but not >much. i’m ordering a hose cozy so that should resolve that.
Great! >i’m still having a hard time getting a seal with the damned >mask. would saline gel or something help with that?
The saline gel works well with nasal pillows, I’m not sure how it would work with a conventional mask. Please let us know if you try it. >i am getting 6 or 7 hours a night on it, and sometimes more. i had >seven and a half on it last night, but now i have a horrible headache
Even "normal" people get an occasional headache… >and i fell asleep getting ready for work again.
Not good. I’d really (once again) suggest an earlier bedtime. Tom
Response:
eric pearson wrote:
: I diagrammed the sentence in question. You probably do not wamt : to see the results (as I suspect you anticipated). i dunno; if you could email them to me it might be interesting. i, too, had high gre verbals (800) (i know it’s bragging, sorry). i’ve forgotten half of what i learned about diagramming, though. : I Yam Disgustified! me, too. — deb if one more customer says "parentheses" when he means "quotation marks"…
Response:
sine nomine <ll…@drizzle.com> wrote: >: "not really confident about them anymore." Lady, you have a positive >: genius for understatement! You’re dealing with a bunch of quacks, >: make _sure_ that your sleep doctor knows about this crew! And, for >: the sake of their possible future victims, who are these people? The >: company name and address would be welcome. <Evil Grin> >actually, it’s odd; swedish sleep institute is one of the best sleep >centers in the country and all of my dealings with them have been >wonderful. but swedish sleep therapy supply is disappointing me. on >the one hand, getting any information at all about why i had to go get >a machine immediately was helpful; otoh, i haven’t really found a tech >there i like very much. i think they don’t like people who research >stuff.
That’s awfully surprising, and very disappointing. I’ve heard absolutely nothing but praise for Swedish, I’d make sure that your sleep doctor knows that there’s a problem. >: Errr, how’s the hose suspension project coming? >i finally suspended it. only i used the bottom edge of the blinds (our >bed’s under the window) and this morning i had my first experience >with serious rainout. the bright side is, i needed to get up anyway.
Was the window open? You may need another layer of insulation. I’ve also wrapped my (quilt batting covered) hoses with Saran Wrap to keep breezes from blowing through the batting. >i’d had a couple of bad nights. last night was okay except for the >having to get up really early because now i work on sundays so i can >still have three days off each week. (i think there are too many >clauses in that sentence. *i’m* not going to diagram it)
It read fine to me, but grammar’s never been one of my strong points. >i hate whining so much.
Don’t worry about it. Really, we understand. Just keep plugging… Tom
Response:
> oh…….. and when you hit the hot flashes of menopause, post here again, i > have a few CPAP tricks that might help with that 
> kate
LOL! The cold wind from the mask exhaust is a blessing for those hot flashes! Unfortunately, my husband is not going through menopause and he does not appreciate the breeze when it blows in his direction 
Judy
Response:
exhaust??? heck…….. i remove the mask from my face and use the whole HOSE to help the hot flash slow down!!! best used in the summer when a hot flash can really be bothersome……. works better than any fan i know of! "Judy Simon" <heyjude0…@verizon.net> wrote in message
news:8DmWd.47320$s16.1211@trndny02… – Hide quoted text — Show quoted text -> > oh…….. and when you hit the hot flashes of menopause, post here again, i > > have a few CPAP tricks that might help with that > > kate > LOL! The cold wind from the mask exhaust is a blessing for those hot > flashes! Unfortunately, my husband is not going through menopause and > he does not appreciate the breeze when it blows in his direction > Judy
Response:
LOL! I won’t knock it- it works Judy – Hide quoted text — Show quoted text -Tiger Lily wrote: > exhaust??? heck…….. i remove the mask from my face and use the whole > HOSE to help the hot flash slow down!!! > best used in the summer when a hot flash can really be bothersome……. > works better than any fan i know of! > "Judy Simon" <heyjude0…@verizon.net> wrote in message > news:8DmWd.47320$s16.1211@trndny02… >>>oh…….. and when you hit the hot flashes of menopause, post here > again, i >>>have a few CPAP tricks that might help with that >>>kate >>LOL! The cold wind from the mask exhaust is a blessing for those hot >>flashes! Unfortunately, my husband is not going through menopause and >>he does not appreciate the breeze when it blows in his direction >>Judy
Response:
i found that the hot flash would make my face sweat under the CPAP mask……….. so THAT was the first site that got the ‘air treatment’ from the CPAP machine……… THEN i found out that ALL areas could benefit by this!!!! lol kate "Judy Simon" <heyjude0…@verizon.net> wrote in message
news:oTpWd.60038$W16.48728@trndny07… – Hide quoted text — Show quoted text -> LOL! I won’t knock it- it works > Judy > Tiger Lily wrote: > > exhaust??? heck…….. i remove the mask from my face and use the whole > > HOSE to help the hot flash slow down!!! > > best used in the summer when a hot flash can really be bothersome……. > > works better than any fan i know of! > > "Judy Simon" <heyjude0…@verizon.net> wrote in message > > news:8DmWd.47320$s16.1211@trndny02… > >>>oh…….. and when you hit the hot flashes of menopause, post here > > again, i > >>>have a few CPAP tricks that might help with that > >>>kate > >>LOL! The cold wind from the mask exhaust is a blessing for those hot > >>flashes! Unfortunately, my husband is not going through menopause and > >>he does not appreciate the breeze when it blows in his direction > >>Judy
Response:
- Hide quoted text — Show quoted text -sine nomine wrote: > Tom Devlin wrote: > : Other folks have said that air from nasal pillows is more "forceful" > : than air from a conventional mask. I don’t understand this, but I’m > : sure that it’s real. > it doesn’t make sense to me in theory, but in practice it’s quite odd. > : Not really "weird", and really pretty "normal" around here. You’re > : actually doing very well, give yourself a Gold Star, or a Godiva’s > : Truffle, whichever you prefer. > mmm. truffle. > : "not really confident about them anymore." Lady, you have a positive > : genius for understatement! You’re dealing with a bunch of quacks, > : make _sure_ that your sleep doctor knows about this crew! And, for > : the sake of their possible future victims, who are these people? The > : company name and address would be welcome. <Evil Grin> > actually, it’s odd; swedish sleep institute is one of the best sleep > centers in the country and all of my dealings with them have been > wonderful. but swedish sleep therapy supply is disappointing me. on > the one hand, getting any information at all about why i had to go get > a machine immediately was helpful; otoh, i haven’t really found a tech > there i like very much. i think they don’t like people who research > stuff. > : Errr, how’s the hose suspension project coming? > i finally suspended it. only i used the bottom edge of the blinds (our > bed’s under the window) and this morning i had my first experience > with serious rainout. the bright side is, i needed to get up anyway. > : Ok, but now how were your _previous_ nights? Sleep debt accumulates. > i’d had a couple of bad nights. last night was okay except for the > having to get up really early because now i work on sundays so i can > still have three days off each week. (i think there are too many > clauses in that sentence. *i’m* not going to diagram it) > i hate whining so much. and loosening the straps does help a lot, > though last night i had a bitch of a time getting a good seal.
I’m with Tom, regarding Swedish. There have been others here who went there. A couple years ago I went to their website and was impressed with their professional staff. However, that could have changed.
Response:
I diagrammed the sentence in question. You probably do not wamt to see the results (as I suspect you anticipated). Many years ago I got a 790 on the verbal part of SAT and a few years later got a 784 pn the verbal pert of the GRE. I was really good at diagramming and still use this tool at work. (You thought your English teacher lied to you about that. You were wrong). At least once a month I must diagram a sentence in a (usually futile) effort to determine what the sender (usually a manager who should be a much more effective communicator) really meant to say Some times I fail to find the intended message. Unfortunately, most of the ‘gobbledygook’ sentences come from senior management. Senior management (mostly WASP!) tends to communicate less precisely than our fresh-off-the-whatever-means-of-transport ethnicians! That causes me as a WAS(lapsed)P some distress. I had a public school education, but am managed by children of the wealthy. These children.with all their high-priced private education, have not managed to acquire basic skills in the use of their native language! As PopEye would say: I Yam Disgustified! . On Mon, 07 Mar 2005 00:20:05 -0000, sine nomine <ll…@drizzle.com> wrote: – Hide quoted text — Show quoted text ->Tom Devlin wrote: >: Other folks have said that air from nasal pillows is more "forceful" >: than air from a conventional mask. I don’t understand this, but I’m >: sure that it’s real. >it doesn’t make sense to me in theory, but in practice it’s quite odd. >: Not really "weird", and really pretty "normal" around here. You’re >: actually doing very well, give yourself a Gold Star, or a Godiva’s >: Truffle, whichever you prefer. >mmm. truffle. >: "not really confident about them anymore." Lady, you have a positive >: genius for understatement! You’re dealing with a bunch of quacks, >: make _sure_ that your sleep doctor knows about this crew! And, for >: the sake of their possible future victims, who are these people? The >: company name and address would be welcome. <Evil Grin> >actually, it’s odd; swedish sleep institute is one of the best sleep >centers in the country and all of my dealings with them have been >wonderful. but swedish sleep therapy supply is disappointing me. on >the one hand, getting any information at all about why i had to go get >a machine immediately was helpful; otoh, i haven’t really found a tech >there i like very much. i think they don’t like people who research >stuff. >: Errr, how’s the hose suspension project coming? >i finally suspended it. only i used the bottom edge of the blinds (our >bed’s under the window) and this morning i had my first experience >with serious rainout. the bright side is, i needed to get up anyway. >: Ok, but now how were your _previous_ nights? Sleep debt accumulates. >i’d had a couple of bad nights. last night was okay except for the >having to get up really early because now i work on sundays so i can >still have three days off each week. (i think there are too many >clauses in that sentence. *i’m* not going to diagram it) >i hate whining so much. and loosening the straps does help a lot, >though last night i had a bitch of a time getting a good seal.
regards, eric pearson nonono.ericp1.non…@nonono.fuse.net
Response:
Tom Devlin wrote:
: Other folks have said that air from nasal pillows is more "forceful" : than air from a conventional mask. I don’t understand this, but I’m : sure that it’s real. it doesn’t make sense to me in theory, but in practice it’s quite odd. : Not really "weird", and really pretty "normal" around here. You’re : actually doing very well, give yourself a Gold Star, or a Godiva’s : Truffle, whichever you prefer. mmm. truffle. : "not really confident about them anymore." Lady, you have a positive : genius for understatement! You’re dealing with a bunch of quacks, : make _sure_ that your sleep doctor knows about this crew! And, for : the sake of their possible future victims, who are these people? The : company name and address would be welcome. <Evil Grin> actually, it’s odd; swedish sleep institute is one of the best sleep centers in the country and all of my dealings with them have been wonderful. but swedish sleep therapy supply is disappointing me. on the one hand, getting any information at all about why i had to go get a machine immediately was helpful; otoh, i haven’t really found a tech there i like very much. i think they don’t like people who research stuff. : Errr, how’s the hose suspension project coming? i finally suspended it. only i used the bottom edge of the blinds (our bed’s under the window) and this morning i had my first experience with serious rainout. the bright side is, i needed to get up anyway. : Ok, but now how were your _previous_ nights? Sleep debt accumulates. i’d had a couple of bad nights. last night was okay except for the having to get up really early because now i work on sundays so i can still have three days off each week. (i think there are too many clauses in that sentence. *i’m* not going to diagram it) i hate whining so much. and loosening the straps does help a lot, though last night i had a bitch of a time getting a good seal. — deb caulking gun?
Response:
On Sat, 5 Mar 2005 15:23:24 -0700, "Tiger Lily" <m…@privacy.com> wrote: >i found that the hot flash would make my face sweat under the CPAP >mask……….. so THAT was the first site that got the ‘air treatment’ from >the CPAP machine……… THEN i found out that ALL areas could benefit by >this!!!! >lol >kate
<Snip> Now I’ll have to try to go to sleep with my mask on, thinking of this.. Talk about a Sleep disorder… I’m going to have to watch someone kill a hog to get this picture out of my mind! Chuck
Response:
- Hide quoted text — Show quoted text -sine nomine wrote: > CPAPHATER wrote: > : I have another sleep disorder now too which I have to deal with, but > : getting the victory over this machine battle has helped. You will too. > thank you for the reassurance. it helps. thank you, too, judy. > : I have a question. What is the 47% thing you mentioned? I haven’t heard > : that. > when i had my sleep test, an hour or two into it they woke me up to > put me on cpap. (i think it was an hour or two because we hadn’t > gotten to the sleep on your back for a couple of hours part yet.) the > next morning, they sent me directly to the dme. i was confused, but > the dme insurance coordinator and then the tech who was fitting the > mask told me that the reason for the rush was that my o2 sat had > dropped to 47% just before they put the mask on. this freaked me out.
The amount of time you spent at 47% is important. 5 min is much less significant than 60 min (by a factor of 12 <g>). I went into the 40’s during one of my PSGs; however, it was only for a relatively small amount of time. I determined this from a plot developed by the lab, from PSG data, showing time vs O2 level. I’ve always had some concerns about my O2 level(s). If I start to feel like crap, for unknown reasons, the first thing I do is borrow a recording pulse oximeter from my CRT. I do this because the results (most always 98%) act as great stress relief. I can rule out that my apnea is causing me problems.
Response:
you said it all Tom what can i add?? i went into this with pig headed muleheaded stubbornness to figure out the entire process and learn how to adapt to CPAP for me, that meant accepting that i wore the mask for only 4 hours for the first couple of weeks…….. hey, thats better than NOT wearing it then i discovered the mask off alert switch and set it to alert me when the mask came off……… that greatly improved my compliance rate all during this i was dealing with a passive humidifier that did sweet tweet to humidifying the air for me……….. and i discussed this with the sleep clinic until they decided that i needed a heated humidifier……. and then i moved to the heated humidifier then i discovered that i was mouth breathing……… so, back to the clinic and they set me up with a head strap to stop the mouth breathing (i seriously had my mouth hanging wide open here) and that was the most annoying device i have ever tried, so i learned to put my tongue on the back of my front upper teeth to form the seal………. and i have had to use the torture device a couple of times since to remind myself that i really don’t want to have to wear a headband……… :-) yeah……… it was a lot of baby steps that got me to full compliance…… but ya know……… the clinic that i would take my smart card to and they downloaded the results…….. they said that i was doing better than most of their patients……. and i credit this group for giving me the tenacity to ’stick it out and hang in there’ and do this one night at a time until i finally reached full compliance (and where i remain today….. i can’t even have a nap without the CPAP machine on) oh…….. and when you hit the hot flashes of menopause, post here again, i have a few CPAP tricks that might help with that kate – Hide quoted text — Show quoted text -"Tom Devlin" <> wrote in message .com… > sine nomine <ll…@drizzle.com> wrote: > >yeah, i had the ramp on. with the nasal pillows, full-force is too > >much at first; with the mask, it’s just right. > Other folks have said that air from nasal pillows is more "forceful" > than air from a conventional mask. I don’t understand this, but I’m > sure that it’s real. > >it was a little better last night, i think. i’m not sure. > Like Kate used to say, "baby steps", you’ll get there. > >: Look, you went years without CPAP, an occasional lapse probably isn’t > >good point. still, i have this horror of turning blue in my > >sleep. it’s weird, because i was reluctant to go to sleep before i got > >the machine. now i’m afraid to go to sleep without the machine but i > >don’t really like going to sleep with it. it’s really getting weird. > Not really "weird", and really pretty "normal" around here. You’re > actually doing very well, give yourself a Gold Star, or a Godiva’s > Truffle, whichever you prefer. > >: You don’t know until you try. Remember that your DME has a stake in > >: getting you compliant, they’ll probably have to take all the gear back > >good point. i’m holding off til i see the sleep doc again. maybe he > >knows something i don’t. i’d call the sleep tech at the dme again, but > >the first one is the guy who suggested i not use the humidifier and > >the second guy is the one who was surprised that i was using nasal > >pillows instead of a nasal mask and who was horrified that i was > >consulting a newsgroup because "they’re full of manufacturer reps who > >will mislead you and try to sell you things." i’m not really confident > >about them anymore. > "not really confident about them anymore." Lady, you have a positive > genius for understatement! You’re dealing with a bunch of quacks, > make _sure_ that your sleep doctor knows about this crew! And, for > the sake of their possible future victims, who are these people? The > company name and address would be welcome. <Evil Grin> > >if it were for you guys, i’d have tossed the machine and started > >sleeping upright on the couch. > That’s why we’re here. > >last night was better, i think. i decided to try to make myself sleep > >on my back, stopped worrying about mouth leak (no tape, just chin > >strap), and used the activa. i set the activa a lot looser than i have > >been, so that i had a good cushion that was a little more than half > >the full expanded size and still sealing. > This sounds good to me, I hope one of our Activa experts will jump in. > >the results were mixed. i went to bed at midnight, woke up at 6.30 for > >the bathroom, slept again until the alarm went off at 8. i don’t think > >i had any major mask problems (it may have been leaking a little at > >6.30, but i don’t remember much). on the other hand, sleeping on my > >back wasn’t terribly comfortable, > Errr, how’s the hose suspension project coming? > >and i was incredibly tired this > >morning — quad-latte-so-i-don’t-crash-the-car-driving-to-work tired. > Ok, but now how were your _previous_ nights? Sleep debt accumulates. > >so i dunno if that’s better or worse. i didn’t need ephedrine once i > >got here, so that’s an improvement, i guess. > Once again, "baby steps". Kate, you want to jump in here? > Tom
Response:
sine nomine <ll…@drizzle.com> wrote: >yeah, i had the ramp on. with the nasal pillows, full-force is too >much at first; with the mask, it’s just right.
Other folks have said that air from nasal pillows is more "forceful" than air from a conventional mask. I don’t understand this, but I’m sure that it’s real. >it was a little better last night, i think. i’m not sure.
Like Kate used to say, "baby steps", you’ll get there. >: Look, you went years without CPAP, an occasional lapse probably isn’t >good point. still, i have this horror of turning blue in my >sleep. it’s weird, because i was reluctant to go to sleep before i got >the machine. now i’m afraid to go to sleep without the machine but i >don’t really like going to sleep with it. it’s really getting weird.
Not really "weird", and really pretty "normal" around here. You’re actually doing very well, give yourself a Gold Star, or a Godiva’s Truffle, whichever you prefer. >: You don’t know until you try. Remember that your DME has a stake in >: getting you compliant, they’ll probably have to take all the gear back >good point. i’m holding off til i see the sleep doc again. maybe he >knows something i don’t. i’d call the sleep tech at the dme again, but >the first one is the guy who suggested i not use the humidifier and >the second guy is the one who was surprised that i was using nasal >pillows instead of a nasal mask and who was horrified that i was >consulting a newsgroup because "they’re full of manufacturer reps who >will mislead you and try to sell you things." i’m not really confident >about them anymore.
"not really confident about them anymore." Lady, you have a positive genius for understatement! You’re dealing with a bunch of quacks, make _sure_ that your sleep doctor knows about this crew! And, for the sake of their possible future victims, who are these people? The company name and address would be welcome. <Evil Grin> >if it were for you guys, i’d have tossed the machine and started >sleeping upright on the couch.
That’s why we’re here. >last night was better, i think. i decided to try to make myself sleep >on my back, stopped worrying about mouth leak (no tape, just chin >strap), and used the activa. i set the activa a lot looser than i have >been, so that i had a good cushion that was a little more than half >the full expanded size and still sealing.
This sounds good to me, I hope one of our Activa experts will jump in. >the results were mixed. i went to bed at midnight, woke up at 6.30 for >the bathroom, slept again until the alarm went off at 8. i don’t think >i had any major mask problems (it may have been leaking a little at >6.30, but i don’t remember much). on the other hand, sleeping on my >back wasn’t terribly comfortable,
Errr, how’s the hose suspension project coming? >and i was incredibly tired this >morning — quad-latte-so-i-don’t-crash-the-car-driving-to-work tired.
Ok, but now how were your _previous_ nights? Sleep debt accumulates. >so i dunno if that’s better or worse. i didn’t need ephedrine once i >got here, so that’s an improvement, i guess.
Once again, "baby steps". Kate, you want to jump in here? Tom
Response:
CPAPHATER wrote:
: I have another sleep disorder now too which I have to deal with, but : getting the victory over this machine battle has helped. You will too. thank you for the reassurance. it helps. thank you, too, judy. : I have a question. What is the 47% thing you mentioned? I haven’t heard : that. when i had my sleep test, an hour or two into it they woke me up to put me on cpap. (i think it was an hour or two because we hadn’t gotten to the sleep on your back for a couple of hours part yet.) the next morning, they sent me directly to the dme. i was confused, but the dme insurance coordinator and then the tech who was fitting the mask told me that the reason for the rush was that my o2 sat had dropped to 47% just before they put the mask on. this freaked me out. — deb fear-based compliance is fun!
Response:
Hi Deb, Thanks for explaining the 47% thing. I didn’t realize your were talking about the oxygen desaturation.(of course) That is low. But I wouldn’t get too freaked out. They did that to me also the first time and told me I had to get on the machine immediately or I would probably die in my sleep. Some people tend to be alarmists. The added stress they put on you does not help but only creates anxiety about not being able to use it ‘perfectly’ immediately. I know how serious our sleep disorders are, but we survived how long ? before the diagnoses so I am not too freaked out about missing the odd time out of necessity or discomfort, especially when (as is the case with you) you are still adjusting and trying to find the right comfort level and ‘fit’ for you. If everything the docs and techs told me were true I would be dead by now. So just keep pursuing the proper equipment match for you and you will be fine. When you get frustrated in the middle of the night and rip it off like I did, just scream as loud as you can to get the anger out, he,he (into your pillow of course so people don’t call the police).
Response:
Tom Devlin wrote:
: If you’re using the Ramp feature, then I’d suggest that you turn it : off. I had to set the minimum pressure during my AutoPAP trial to the : pressure from my previous titration, I didn’t feel that I could breath : at the default low pressure. yeah, i had the ramp on. with the nasal pillows, full-force is too much at first; with the mask, it’s just right. : It’s starting to sound like you may need a full-face mask, Norm is our : resident expert here. it was a little better last night, i think. i’m not sure. : Look, you went years without CPAP, an occasional lapse probably isn’t : going to kill you. Andy recently mentioned that the "splinting" effect : of CPAP often lasts for a night or two, the last thing you need right : now is something else to worry about. good point. still, i have this horror of turning blue in my sleep. it’s weird, because i was reluctant to go to sleep before i got the machine. now i’m afraid to go to sleep without the machine but i don’t really like going to sleep with it. it’s really getting weird. : You don’t know until you try. Remember that your DME has a stake in : getting you compliant, they’ll probably have to take all the gear back : if you don’t show good numbers after 30 days. And that means that : they’ll lose money… good point. i’m holding off til i see the sleep doc again. maybe he knows something i don’t. i’d call the sleep tech at the dme again, but the first one is the guy who suggested i not use the humidifier and the second guy is the one who was surprised that i was using nasal pillows instead of a nasal mask and who was horrified that i was consulting a newsgroup because "they’re full of manufacturer reps who will mislead you and try to sell you things." i’m not really confident about them anymore. : Compliance issues are usually due to lack of proper support. That : doesn’t apply to you, because you have us, and our batting average is : _very_ good. if it were for you guys, i’d have tossed the machine and started sleeping upright on the couch. : We can’t work magic, but we _are_ here for you, even if we’re just a : handy target to scream at. : So don’t hold back, ok? You _will_ get through this! thank you. last night was better, i think. i decided to try to make myself sleep on my back, stopped worrying about mouth leak (no tape, just chin strap), and used the activa. i set the activa a lot looser than i have been, so that i had a good cushion that was a little more than half the full expanded size and still sealing. the results were mixed. i went to bed at midnight, woke up at 6.30 for the bathroom, slept again until the alarm went off at 8. i don’t think i had any major mask problems (it may have been leaking a little at 6.30, but i don’t remember much). on the other hand, sleeping on my back wasn’t terribly comfortable, and i was incredibly tired this morning — quad-latte-so-i-don’t-crash-the-car-driving-to-work tired. so i dunno if that’s better or worse. i didn’t need ephedrine once i got here, so that’s an improvement, i guess. — deb still wishing they made full head masks
Response:
sine nomine wrote: i don’t know that i expect anyone to > have solutions (though that would be nice). i am just so so so bleah > about this right now. i want someone to make it go away.
Hang in there Deb. With the support of all the experience in this NG, you’ll make it. Judy
Response:
Wow! Can I relate to what you are going through, hence my nickname CPAPHATER. I almost chucked it a few times. If it weren’t for the patience of my wonderful doc and her persistence and help working with the DME, I would not be here. I was diagnosed in 2001 and so many problems, anxiety, panick attacks etc. trying to use those masks that I had decided I was better off just to die than go through that. So it may be a road of trial and error for you but please persist in finding the right combination for you. I have found these systems are like thumbprints and there are no too alike. You just have to find the right combination for you. Once you do, life will change dramatically. I NEVER would have believed I could ever use one let alone become compliant but I now use it every single night for at least 8 hours effortlessy, no problems. So you WILL get there! I remember being so angry and rebelliouse and obstinate it is a wonder my doctor even kept me on. But when you are so sleep deprived you can’t cope with normal daily stress and then having to use this machine just helps to blow (pardon the pun) everything out of proportion. I look back now at all the anger and frustration I felt and how I almost gave up. I have another sleep disorder now too which I have to deal with, but getting the victory over this machine battle has helped. You will too. I have a question. What is the 47% thing you mentioned? I haven’t heard that.
Response:
sine nomine <ll…@drizzle.com> wrote: >last night was horrible. i started out with the activa, had a horrid >panic attack (no idea why, but then with panic attacks you usually >don’t have a reason) and had to take it off because it was >exacerbating the whole "can’t breathe" feeling that comes with panic >attacks.
If you’re using the Ramp feature, then I’d suggest that you turn it off. I had to set the minimum pressure during my AutoPAP trial to the pressure from my previous titration, I didn’t feel that I could breath at the default low pressure. >when things were okay again, i put the nasal pillows on. they >hurt. and i’ve been trying to figure out ways to keep myself from >breathing through my lips even with the chin strap — things like a >curad telfa pad and paper tape (just the tape by itself gets soggy >overnight), but i can breathe through that, too. the chin strap (a >resmed one with a back strap to keep it in place) keeps my jaw closed, >but it doesn’t keep my lips closed.
It’s starting to sound like you may need a full-face mask, Norm is our resident expert here. >besides not working, the paper tape means that once i put it on i >can’t talk at all, not even to say sweet things to my husband. so that >sucks, because i like to cuddle before sleep and sometimes he comes to >bed well after i do. at least with mask/chinstrap i can turn things >off for a moment and say hello.
Well, ok… But ask your husband if he’d rather hear from you at night, or still have you alive in the morning. >last night, i think i managed 3 or 4 hours with the pillows, then gave >up in disgust and slept too late and missed jury duty and woke up >feeling awful and headachy, and scared that i’d done something >horrible to my brain by not using the machine (yes, the insurance >coordinator did put the fear of god into me by telling me about the >47% thing).
Look, you went years without CPAP, an occasional lapse probably isn’t going to kill you. Andy recently mentioned that the "splinting" effect of CPAP often lasts for a night or two, the last thing you need right now is something else to worry about. >it’s gotten so i’m wondering if i should get a huge activa cushion and >use it like a ffm. i mean, i don’t think i can go get another mask >because i’ve already done that once and i don’t even know if insurance >would pay for one.
You don’t know until you try. Remember that your DME has a stake in getting you compliant, they’ll probably have to take all the gear back if you don’t show good numbers after 30 days. And that means that they’ll lose money… >i know that it wouldn’t work, but i really do >understand why compliance is an issue. at first, i figured that i >could put up with whatever for a few weeks til i got used to it, but >i’m so frustrated that i’m beginning to wonder if i was better off >without the damned machine.
Compliance issues are usually due to lack of proper support. That doesn’t apply to you, because you have us, and our batting average is _very_ good. >i see my sleep doctor in a week to go over the results of the psg and >talk about what it all means. i’m trying hard not to fling the machine >out the window until then (it helps that it’s a first-floor window so >it wouldn’t accomplish much).
My wife feels the same way about her sewing machine. <g> > i don’t know that i expect anyone to >have solutions (though that would be nice). i am just so so so bleah >about this right now. i want someone to make it go away.
We can’t work magic, but we _are_ here for you, even if we’re just a handy target to scream at. So don’t hold back, ok? You _will_ get through this! Tom
Response:
last night was horrible. i started out with the activa, had a horrid panic attack (no idea why, but then with panic attacks you usually don’t have a reason) and had to take it off because it was exacerbating the whole "can’t breathe" feeling that comes with panic attacks. when things were okay again, i put the nasal pillows on. they hurt. and i’ve been trying to figure out ways to keep myself from breathing through my lips even with the chin strap — things like a curad telfa pad and paper tape (just the tape by itself gets soggy overnight), but i can breathe through that, too. the chin strap (a resmed one with a back strap to keep it in place) keeps my jaw closed, but it doesn’t keep my lips closed. besides not working, the paper tape means that once i put it on i can’t talk at all, not even to say sweet things to my husband. so that sucks, because i like to cuddle before sleep and sometimes he comes to bed well after i do. at least with mask/chinstrap i can turn things off for a moment and say hello. last night, i think i managed 3 or 4 hours with the pillows, then gave up in disgust and slept too late and missed jury duty and woke up feeling awful and headachy, and scared that i’d done something horrible to my brain by not using the machine (yes, the insurance coordinator did put the fear of god into me by telling me about the 47% thing). it’s gotten so i’m wondering if i should get a huge activa cushion and use it like a ffm. i mean, i don’t think i can go get another mask because i’ve already done that once and i don’t even know if insurance would pay for one. i know that it wouldn’t work, but i really do understand why compliance is an issue. at first, i figured that i could put up with whatever for a few weeks til i got used to it, but i’m so frustrated that i’m beginning to wonder if i was better off without the damned machine. i see my sleep doctor in a week to go over the results of the psg and talk about what it all means. i’m trying hard not to fling the machine out the window until then (it helps that it’s a first-floor window so it wouldn’t accomplish much). i don’t know that i expect anyone to have solutions (though that would be nice). i am just so so so bleah about this right now. i want someone to make it go away. — deb maybe if i had a spaceman helmet…
