Newbie Question Please
Question:
"Harlan Lachman" <hlach…@nospamadelphia.net> wrote in message
news:hlachman-9BE149.16170104052004@isp.ash.giganews.com… – Hide quoted text — Show quoted text -> Bob, this is a fair question. > 1. Most of us cannot afford non-success. The health impacts of not > treating OSA are too severe. So non success is not an option you should > consider. > 2. OTOH, few folks I have talked to will rave about how great their DMEs > is/was and how (s)he solved all their problems and made compliance easy. > 3. Most of us hang out here because here is the expertise that could > make your life and compliance a lot easier. > 4. You can have it be too expensive or a lot less expensive depending > on how demanding you are of your rights. You don’t give a lot of > information but for starters: > A. Make sure you are prescribed by your doctor a CPAP machine with > heated humidification, perhaps CFLEX, and one that is reported to be > quiet and small. I lucked out, at least according to members of my local > AWAKE group and got a Respironics Remstar Plus with CFLEX. Other good > machines with heated humidification are available. > B. Make sure you determine whether you prefer nasal masks, full face > masks or pillows as soon as you can. If your DME can’t/won’t help you, > see if you can visit your sleep lab or Doctor or local awake group and > try the three different styles — under pressure. They are so different. > C. I use Nasal Masks. Since you have to start with one, I recommend > starting with the ResMed Mirage Activa. There may be better masks for > you out there, but this one won’t leak and will be ok if you move around > until you find the ideal mask(s). > D. If you use pillows, insist on the Adams Circuit with the Conjo > Headgear. Too many people like it for it not to be a good > representative. Again, there are options you might prefer once you get > over the first few weeks/months of usage (e.g., the Breeze and the > Comfort Lite which is my second system — many of us need two systems to > vary between to avoid rashes, change of pace, etc.). But based on my > reading, you want to start with a bullet proof system and the Adams with > Conjo is the one. > E. If you need a full face, contact Sleep Net Corporation and try to get > to be a beta tester for their full face mask. Others in this NG may > disagree but it seems to me that this segment is getting gyped when one > looks at all the innovations in just the past year. > F. When something feels wrong or impossible, check Tal’s FAQ. It saved > my life when I had a cold and helped me make a lot of minor adjustments. > Only ten thousand notes convinced me that I could actually stop leaks of > some masks by loosening them. > G. If you don’t find the answer in the FAQ (a selected search engine), > post as specific a question as you can. You would be surprised how much > others can help. > H. Join and participate in your local AWAKE chapter. If there is not one > in your area, start one as I did with our local lab. We have had > numerous reps come and demonstrate their wares. This is best way to > learn about what options there are. > In other words, Bob, if you don’t let yourself be a victim, you can be > compliant. By definition, hooking oneself up to a mask or pillow, hose > and machine will not be "easy". And I have heard no one describe this > gear as cheap (if you have any copay at all). But it is doable, > affordable and worth your effort. > harlan > BTW, thanks to all who have helped me get to this point. > In article <a6Hlc.17027$Ut1.515…@bgtnsc05-news.ops.worldnet.att.net>, > "Bob Newman" <bobnew…@worldnet.att.net> wrote: > > I’ve been diagnosed with sleep apnea, even though I thought I had a restless > > night with the study, they said the testing machine indecated my sleep was > > significantly better with the mask. It looks like I’m getting a CPAP. > > I am very apprehensive reading this newsgroups re all the different types of > > CPAPs, masks, settings, etc. and problems people seem to be having with > > them. Is it just because that is the nature of a group like this or is this > > likely to be a very bumpy, expensive venture with a significant chance of > > non-success for me? > > I realize the question is quite general but any help you could give would be > > greatly appreciated. > — > To respond, obviously drop the "nospan"?
I’ll second some of the other posters here. We all looked at this with dismay, but considered the alternatives. Then we DID it. Really, it’s not that bad. Weird at first, but not all that bad. I disagree with Harlan on the nasal pillows. I’ve tried ADAM (but in fairness, not CONJO). I’ve stuck with the Breeze. It works. I can’t answer whether anything would work better; I don’t know. The only alternative I tried was the NasalAire, and it didn’t work for me (but it’s worked just fine for others). We all have unique head sizes and shapes, and beak sizes and shapes. This isn’t a "one size fits all" situation. Best advise I can give is try as many variants as you can. Your "interface" (mask/pillows) should give you a comfortable seal, but shouldn’t be tight. Be aware of nasty things like pressure sores. Tightening up on your interface increases your liklihood of pressure sores. If your interface leaks, and you can’t stop it without cinching up on the straps, you need a different design. For blowers, I’d look at the Resmed Elite series. I have a "Sullivan VI" (now obsolete) and I love how quiet it is. I’ve compared with the Puritan Bennet Goodnight 420 and a Tranquility model (don’t remember which). Also Resmed (son has one). It’s not even close. Try to listen to them. If you travel consider a travel bag. The bag has to be big enough to hold all your gear plus an extension cord and cube-tap (multi-outlet). Too many hotels don’t have an outlet near the bed, or have all of the outlets occupied. But don’t carry too big a bag. Keep us posted here. Some of us have had a rough start, and others have just taken to it with no problems. If you’re lucky, the latter will be your story. But there are enough of us here who have had problems to offer suggestions and sympathy (empathy, I think). Paul R
Response:
Bob, this is a fair question. 1. Most of us cannot afford non-success. The health impacts of not treating OSA are too severe. So non success is not an option you should consider. 2. OTOH, few folks I have talked to will rave about how great their DMEs is/was and how (s)he solved all their problems and made compliance easy. 3. Most of us hang out here because here is the expertise that could make your life and compliance a lot easier. 4. You can have it be too expensive or a lot less expensive depending on how demanding you are of your rights. You don’t give a lot of information but for starters: A. Make sure you are prescribed by your doctor a CPAP machine with heated humidification, perhaps CFLEX, and one that is reported to be quiet and small. I lucked out, at least according to members of my local AWAKE group and got a Respironics Remstar Plus with CFLEX. Other good machines with heated humidification are available. B. Make sure you determine whether you prefer nasal masks, full face masks or pillows as soon as you can. If your DME can’t/won’t help you, see if you can visit your sleep lab or Doctor or local awake group and try the three different styles — under pressure. They are so different. C. I use Nasal Masks. Since you have to start with one, I recommend starting with the ResMed Mirage Activa. There may be better masks for you out there, but this one won’t leak and will be ok if you move around until you find the ideal mask(s). D. If you use pillows, insist on the Adams Circuit with the Conjo Headgear. Too many people like it for it not to be a good representative. Again, there are options you might prefer once you get over the first few weeks/months of usage (e.g., the Breeze and the Comfort Lite which is my second system — many of us need two systems to vary between to avoid rashes, change of pace, etc.). But based on my reading, you want to start with a bullet proof system and the Adams with Conjo is the one. E. If you need a full face, contact Sleep Net Corporation and try to get to be a beta tester for their full face mask. Others in this NG may disagree but it seems to me that this segment is getting gyped when one looks at all the innovations in just the past year. F. When something feels wrong or impossible, check Tal’s FAQ. It saved my life when I had a cold and helped me make a lot of minor adjustments. Only ten thousand notes convinced me that I could actually stop leaks of some masks by loosening them. G. If you don’t find the answer in the FAQ (a selected search engine), post as specific a question as you can. You would be surprised how much others can help. H. Join and participate in your local AWAKE chapter. If there is not one in your area, start one as I did with our local lab. We have had numerous reps come and demonstrate their wares. This is best way to learn about what options there are. In other words, Bob, if you don’t let yourself be a victim, you can be compliant. By definition, hooking oneself up to a mask or pillow, hose and machine will not be "easy". And I have heard no one describe this gear as cheap (if you have any copay at all). But it is doable, affordable and worth your effort. harlan BTW, thanks to all who have helped me get to this point. In article <a6Hlc.17027$Ut1.515…@bgtnsc05-news.ops.worldnet.att.net>, "Bob Newman" <bobnew…@worldnet.att.net> wrote: > I’ve been diagnosed with sleep apnea, even though I thought I had a restless > night with the study, they said the testing machine indecated my sleep was > significantly better with the mask. It looks like I’m getting a CPAP. > I am very apprehensive reading this newsgroups re all the different types of > CPAPs, masks, settings, etc. and problems people seem to be having with > them. Is it just because that is the nature of a group like this or is this > likely to be a very bumpy, expensive venture with a significant chance of > non-success for me? > I realize the question is quite general but any help you could give would be > greatly appreciated.
– To respond, obviously drop the "nospan"?
Response:
Bob Newman wrote: > I’ve been diagnosed with sleep apnea, even though I thought I had a restless > night with the study, they said the testing machine indecated my sleep was > significantly better with the mask. It looks like I’m getting a CPAP. > I am very apprehensive reading this newsgroups re all the different types of > CPAPs, masks, settings, etc. and problems people seem to be having with > them. Is it just because that is the nature of a group like this or is this > likely to be a very bumpy, expensive venture with a significant chance of > non-success for me? > I realize the question is quite general but any help you could give would be > greatly appreciated.
Bob, Hang in there, I’ll get back to you as soon as I can. — Bob Gootee
Response:
Biggest hint for success is don’t let the DME off easy on the mask/pillows. Make sure they let you try several so you can find what works for you. Next hint is ‘pay attention’. If you note anything wrong or you are not getting results, inform your doc in detail. regards, eric pearson nonono.ericp1.non…@nonono.fuse.net On Tue, 04 May 2004 06:53:58 GMT, "Bob Newman" – Hide quoted text — Show quoted text -<bobnew…@worldnet.att.net> wrote: >I’ve been diagnosed with sleep apnea, even though I thought I had a restless >night with the study, they said the testing machine indecated my sleep was >significantly better with the mask. It looks like I’m getting a CPAP. >I am very apprehensive reading this newsgroups re all the different types of >CPAPs, masks, settings, etc. and problems people seem to be having with >them. Is it just because that is the nature of a group like this or is this >likely to be a very bumpy, expensive venture with a significant chance of >non-success for me? >I realize the question is quite general but any help you could give would be >greatly appreciated.
Response:
Bob…… with the help of this newsgroup i was able to become a compliant CPAP user. It takes determination (for me it did) to tell yourself you WILL become adapted to the strange mask on your face at night. Last night i woke up (stresses bugging me) and i thought, maybe it’s the mask….. i’ll try to sleep without that…….. couldn’t sleep, put the mask back on and within 15 min i was sleeping soundly again you WILL adapt, and this group will help you do just that kate "Bob Newman" <bobnew…@worldnet.att.net> wrote in message
news:a6Hlc.17027$Ut1.515765@bgtnsc05-news.ops.worldnet.att.net… – Hide quoted text — Show quoted text -> I’ve been diagnosed with sleep apnea, even though I thought I had a restless > night with the study, they said the testing machine indecated my sleep was > significantly better with the mask. It looks like I’m getting a CPAP. > I am very apprehensive reading this newsgroups re all the different types of > CPAPs, masks, settings, etc. and problems people seem to be having with > them. Is it just because that is the nature of a group like this or is this > likely to be a very bumpy, expensive venture with a significant chance of > non-success for me? > I realize the question is quite general but any help you could give would be > greatly appreciated. > — > Thanks in advance… Bob
Response:
I’ve been diagnosed with sleep apnea, even though I thought I had a restless night with the study, they said the testing machine indecated my sleep was significantly better with the mask. It looks like I’m getting a CPAP. I am very apprehensive reading this newsgroups re all the different types of CPAPs, masks, settings, etc. and problems people seem to be having with them. Is it just because that is the nature of a group like this or is this likely to be a very bumpy, expensive venture with a significant chance of non-success for me? I realize the question is quite general but any help you could give would be greatly appreciated. — Thanks in advance… Bob
Response:
Bob Newman <bobnew…@worldnet.att.net> wrote: > QUESTIONS, (PLEASE see complication below): > 1. Is it possible that even though I didn’t realize I had a better night’s > sleep, medically I did and I would receive significant benefit?
Yes, that’s how it worked for me. > 2. Can I rent a machine or get a loaner for a trial time to see how well it > works with me?
Probably — your doctor will be able to refer you (note that rental depends a lot upon where you’re located in teh world). > 3. I understand there are different machines and masks of different features > and qualities. How is it possible to find the right one without of course > spending a fortune on the process of elimination?
All of them are better than nothing. > NOTE: ***IMPORTANT COMPLICATION*** > I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week > out of the blue I had to have emergency quintuple cardiac bi-pass surgery > and got home from the hospital this week, needless to say so far that rehab > has not been the most pleasant thing. Should the mask be postponed until > the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of > extra strain on my heart in the 1st place and needs to be taken care of ASAP > for better surgical recovery and future health in general?
The latter. Get it asap. There’s lots of people here who have had lower blood pressure as a result of having their apnea treated (I only got lower ocular pressure, but I don’t suffer from high BP). — _Deirdre http://deirdre.net "Ideally pacing should look like the stock market for the year 1999, up and up and up, but with lots of little dips downwards…." – Wen Spencer on plotting a novel
Response:
On Thu, 22 Apr 2004 21:25:09 GMT, Bob Newman pontificated at length: >1. Is it possible that even though I didn’t realize I had a better night’s >sleep, medically I did and I would receive significant benefit?
Definitely. Despite the name, sleep labs are not the best place to sleep. (OTOH, I was one of the lucky ones who knew his titration worked when he woke up.) >2. Can I rent a machine or get a loaner for a trial time to see how well it >works with me?
That’s a question to ask your insurance (I think you’re in the USA). >3. I understand there are different machines and masks of different features >and qualities. How is it possible to find the right one without of course >spending a fortune on the process of elimination?
The mask is the critical thing. >I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week >out of the blue I had to have emergency quintuple cardiac bi-pass surgery >and got home from the hospital this week, needless to say so far that rehab >has not been the most pleasant thing. Should the mask be postponed until >the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of >extra strain on my heart in the 1st place and needs to be taken care of ASAP >for better surgical recovery and future health in general?
I think this is one to ask the doctor. It does slightly increase breathing load, but apnea events aren’t good. — "So many sneakers, not enough feet." http://sneakers.pair.com/
Response:
On Thu, 22 Apr 2004 22:28:19 GMT, VRadin pontificated at length: >The untreated, and probably undiagnosed, apnea is almost >certainly a DIRECT CAUSE of your recent need for the heart >surgery. While it may not be the primary cause (cholesterol? >genetics?) it sure didn’t help you any.
Then, there’s the new cause for heart disease: "inflammation." FWIW, I’ve already had the Cardio CRP test. — "So many sneakers, not enough feet." http://sneakers.pair.com/
Response:
Bob Newman wrote: > I am a long time diabetic (diet & exercise controlled) who has recently been
Bob, Same here but I take insulin. Have had diabetes 15+ yrs., APNEA 9 yrs (diagnosed and treated) > diagnosed with sleep apnea and have a couple of questions please. I spent a > night in the hospital having the apnea test (no mask). Then they said a > needed one so I went back for another test with the mask. In the morning > they said that I did great and their equipment said I slept much better. I > felt that I slept a very restless night and did not sleep well at all. I’m > afraid if I go through with the mask & equipment I’ll wind up paying lots of > money for something that gives me no benefit. > QUESTIONS, (PLEASE see complication below): > 1. Is it possible that even though I didn’t realize I had a better night’s > sleep, medically I did and I would receive significant benefit?
See this – http://members.tripod.com/%7Esleephealth/phys8.html > 2. Can I rent a machine or get a loaner for a trial time to see how well it > works with me?
Yes*. Most insurance companies rent for 1 year, month by month with it being paid off at the one year mark just for that reason. Some don’t take or adapt to the CPAP and give up on it. *Note: This depends on the DME and their policy that you go to. > 3. I understand there are different machines and masks of different features > and qualities. How is it possible to find the right one without of course > spending a fortune on the process of elimination?
Not an easy thing to do, read and ask a lot of questions here and look at machines and the specs at the web sites. Also see – http://www.talhost.net/sleep/index.html > NOTE: ***IMPORTANT COMPLICATION*** > I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week > out of the blue I had to have emergency quintuple cardiac bi-pass surgery > and got home from the hospital this week, needless to say so far that rehab > has not been the most pleasant thing. Should the mask be postponed until > the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of > extra strain on my heart in the 1st place and needs to be taken care of ASAP > for better surgical recovery and future health in general?
Four years ago I had a quad bypass after having a heart attack. I have many other health problems also. Get on a CPAP. I was back on mine as soon as they took the tubes out of my throat. I always take my CPAP to the hospital with me. If you looked at the URL I gave, you can see untreated APNEA causes your blood pressure to rise and rise as the night goes on. You do not want to blow a gasket or stroke out, we need another Bob around here 
> I realize that this is a lot and most of you are not doctors (although some > are) but any help you could give would be greatly appreciated.
Welcome aboard. — Bob Gootee
Response:
I am a long time diabetic (diet & exercise controlled) who has recently been diagnosed with sleep apnea and have a couple of questions please. I spent a night in the hospital having the apnea test (no mask). Then they said a needed one so I went back for another test with the mask. In the morning they said that I did great and their equipment said I slept much better. I felt that I slept a very restless night and did not sleep well at all. I’m afraid if I go through with the mask & equipment I’ll wind up paying lots of money for something that gives me no benefit. QUESTIONS, (PLEASE see complication below): 1. Is it possible that even though I didn’t realize I had a better night’s sleep, medically I did and I would receive significant benefit? 2. Can I rent a machine or get a loaner for a trial time to see how well it works with me? 3. I understand there are different machines and masks of different features and qualities. How is it possible to find the right one without of course spending a fortune on the process of elimination? NOTE: ***IMPORTANT COMPLICATION*** I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week out of the blue I had to have emergency quintuple cardiac bi-pass surgery and got home from the hospital this week, needless to say so far that rehab has not been the most pleasant thing. Should the mask be postponed until the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of extra strain on my heart in the 1st place and needs to be taken care of ASAP for better surgical recovery and future health in general? I realize that this is a lot and most of you are not doctors (although some are) but any help you could give would be greatly appreciated. — Thanks in advance… Bob
Response:
In article <VKWhc.11357$_o3.370…@bgtnsc05-news.ops.worldnet.att.net>, bobnew…@worldnet.att.net says… <<snippity snip>> > NOTE: ***IMPORTANT COMPLICATION*** > I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week > out of the blue I had to have emergency quintuple cardiac bi-pass surgery > and got home from the hospital this week, needless to say so far that rehab > has not been the most pleasant thing. Should the mask be postponed until > the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of > extra strain on my heart in the 1st place and needs to be taken care of ASAP > for better surgical recovery and future health in general? > I realize that this is a lot and most of you are not doctors (although some > are) but any help you could give would be greatly appreciated.
Well, nothing like closing the barn door after the horse is gone <g>. Apnea is listed as a direct cause of CHD, CHF, and hypertension among other nasty and bothersome health problems. The untreated, and probably undiagnosed, apnea is almost certainly a DIRECT CAUSE of your recent need for the heart surgery. While it may not be the primary cause (cholesterol? genetics?) it sure didn’t help you any. That said- glad to hear you’re home, but get that xpap & mask and get hooked up as soon as possible. You WILL have a better chance of recovery, you WILL put less strain on your already over-taxed ticker, and very possibly improve your future health. Hope you feel better, and keep us posted on your progress- compliance with the xpap can be a problem and there’s lots of great advice here about how to solve that. Vic
Response:
On Thu, 22 Apr 2004 21:25:09 GMT, "Bob Newman" – Hide quoted text — Show quoted text -<bobnew…@worldnet.att.net> wrote: >I am a long time diabetic (diet & exercise controlled) who has recently been >diagnosed with sleep apnea and have a couple of questions please. I spent a >night in the hospital having the apnea test (no mask). Then they said a >needed one so I went back for another test with the mask. In the morning >they said that I did great and their equipment said I slept much better. I >felt that I slept a very restless night and did not sleep well at all. I’m >afraid if I go through with the mask & equipment I’ll wind up paying lots of >money for something that gives me no benefit. >QUESTIONS, (PLEASE see complication below): >1. Is it possible that even though I didn’t realize I had a better night’s >sleep, medically I did and I would receive significant benefit? >2. Can I rent a machine or get a loaner for a trial time to see how well it >works with me? >3. I understand there are different machines and masks of different features >and qualities. How is it possible to find the right one without of course >spending a fortune on the process of elimination? >NOTE: ***IMPORTANT COMPLICATION*** >I received the sleep disorder diagnosis about 2 1/2 weeks ago. Last week >out of the blue I had to have emergency quintuple cardiac bi-pass surgery >and got home from the hospital this week, needless to say so far that rehab >has not been the most pleasant thing. Should the mask be postponed until >the rehab is further along? OR IS IT POSSIBLE that the apnea put a lot of >extra strain on my heart in the 1st place and needs to be taken care of ASAP >for better surgical recovery and future health in general? >I realize that this is a lot and most of you are not doctors (although some >are) but any help you could give would be greatly appreciated.
Up to the point where you said "IMPORTANT COMPLICATION", you were describing a not brilliant sleep study, but probably an adequate one. The hospital environment is not the best for diagnosis, but even though you think you didn’t sleep well, you almost certainly did sleep enough for them to form a good diagnosis. Now that you have had a cardiac issue diagnosed (to put it mildly, and I’m glad it’s gone well), it can put a different perspective on the exact treatment required and equipment used. I think that the right thing to do is to discuss the apnoea issue with the cardiologist and see what he says in terms of when to deal with the apnoea issue. It is certainly possible that apnoea has had an effect on your heart – it has been linked to raised blood pressure, heart enlargement and several other cardio-vascular issues Certainly the cardiologist should communicate with the sleep clinic so that the right things are done at the right time. .andy To email, substitute .nospam with .gl
