Question:
Thanks for your response, Warren. Warren wrote: >Stimulants are only short term something has to be done about the sleep apnea.
The premise of my original question was that all available treatments had already been tried and failed and/or were untolerable so I am left with the only option of pursuing symptomatic relief. In other words, assume in my question that nothing can be done about the actual underlying condition. >Eventually stimulants will kill because most increase heart rate and the old heart will just wear out.
Probably an accurate statement of fact, but I don’t see why I would really care. I am age 42…any idea of how long my currently healthy heart could tolerate stimulants? I’d guess it would handle them longer than my body can handle the severe apnea. I think I’ll wake up dead sooner than the time frame for all the other issues to catch up with me. So in the meantime, I’d really prefer to be as comfortable as possible while living with this condition….whether that is 15 years or 15 months. By the way, I consider pills a very acceptable and tolerate treatment, relative to surgery, CPAP, etc. even if the pills are only pallative in nature. Keith
Response:
- Hide quoted text — Show quoted text -"D. Keith Lamb" wrote: > Thanks for your response, Warren. > Warren wrote: > <<snipped>> > >Eventually stimulants will kill because most increase heart rate and the old heart will just wear out. > Probably an accurate statement of fact, but I don’t see why I would > really care. I am age 42…any idea of how long my currently healthy > heart could tolerate stimulants? I’d guess it would handle them longer > than my body can handle the severe apnea. I think I’ll wake up dead > sooner than the time frame for all the other issues to catch up with me. > So in the meantime, I’d really prefer to be as comfortable as possible > while living with this condition….whether that is 15 years or 15 > months. By the way, I consider pills a very acceptable and tolerate > treatment, relative to surgery, CPAP, etc. even if the pills are only > pallative in nature.
Actually, you’ll be in double danger. The increased heart risk from severe apnea at night will be compounded by the use of stimulants in the daytime. In your situation I would consider getting a trache. It’s minor surgery compared to the UPPP, tongue advancement, MMA route and will increase both your life span and the quality of life. Big Al
Response:
"D. Keith Lamb" <kl…@columbus.rr.com> wrote in message news:3C12782C.4010201@columbus.rr.com… > As I have indicated before in this group, I have been unable to access > any effective treatment for OSA, finding them all intolerable. > In a week I have a follow up meeting with my sleep doctor to discuss the > results of my recent sleep study. I intend to discuss shifting our > efforts from our long-standing-but-futile effort to ‘fix’ the problem to > one of simply treating the symptoms. The way I figure it, if you can’t > fix the disease then at least make the symptoms as livable as possible.
Keith, How long did you try CPAP before you declared it "intolerable"? Very few people take to it right away – it took me a few days and I think that makes me one of the lucky ones. If your aversion is to the mask, there are many alternative masks available, or sometimes it’s just a matter of fiddling with the straps and adjustments and/or using a swing arm to make it more comfortable. People have also suggested wearing the mask while reading or watching TV in a chair for awhile (even without the machine on) to get used to it gradually before trying to sleep with it. If it’s exhaling against pressure you find intolerable, consider biPAP, autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as to merit all the effort you can muster. It sounds like you’ve got yourself completely talked out of trying it again – do yourself and your loved ones a favor, adopt a more positive attitude, and keep trying. Good luck, Buddy
Response:
The point i’m making is…..it’s not just YOUR life we’re talking about now…… plain and simple…..you’re putting other people’s lives at isk - you need to think seriously about that Beth in oz "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message news:3C18DC79.9060106@columbus.rr.com… My might has just responded to me by saying that there isn’t amy current technology which can meet my needs and objectives. You don’t have to get insulting about it. Like everyone else, I’m just trying to find my own way to deal with this disease. Keith Tal wrote:
now you’re just sounding like a spoilt brat who wants everything handed tothem on a platter…..the good things in life always involve hard work, andoften pain! it’s the dififcult things that make us stronger peopleMy only suggetsion for you now, is cancel your drivers license, and don’tEVER operate machinery cause you’re going to kill someone by yourstubbourness.You don’t even want to try, two attempts os NOT enough… but that’s up toyou….do what you like with your own life, but as i just said, don’t riskthe lives of others as well, when you fall asleep at the wheel or whatever,you will have to suffer the concequences.And after you’ve quit driving and operating machinery or anything else riskywhen you don’t have full concentration or risk causing injury when you fallasleep….then, all that is left for you to do is pray. God is the onlyone that can give you the pain free, trouble free, effo rt free miracle cure.I sound a bit mean? well, we’ve tried to help, but you don’t want to behelped unless it costs you nothing at all…… it’s kinda like they say,nothing is free…..if it doesn’t cost you financially, it’ll cost you ineffort or persistance or pain…….. you’re NOT going to find your miraclecure in the medical community OR in this newsgroup…. if you realise thatsoon, perhaps you can start to find some answersBeth"D. Keith Lamb" <kl…@columbus.rr.com> wrote in messagenews:3C15BDC5.6060507@columbus.rr.com… I didn’t see Betts post earlier. Most of the things she mentions aren’tapplicable to me…that is, the things she discusses changing aren’t inalignment with the problems I faced. While I’m sure some people havethe problems she mentions, my actual concerns were a bit obliquecompared to how she seemed to read into my situation.For example, I never said I had claustrophobic feelings…but quite afew people seemed to have read this from my postings. My problem withthe mask and tubing and all the rest is simply the [unpleasant]sensations associated with all this stuff touching my face and hangingonto me when I’m trying to sleep. Even if I could get ot sleep, theinstant I turned over I’d make a mess of it all and wake up…then I’dthrow it against the wall.But most of all, I have really big problems with things in my mouth andnose…which makes me perplexed at the common suggestion to use nasalp illows. There is simply not a chance in the world that would work forme. For example, I cannot tolerate a nasal oxygen cannula…how couldI stand something that stuck up in my nose? Sheesh, my hats off tothose who can do stuff like this…but I sure don’t know how they canstand it…I really don’t.As to pressure, it was positive pressure, particularly on exhalation,that I couldn’t’ stand. So advice to increase the pressure makes zerosense to me. I believe if the pressure where reduced to 0(demand-based) that I COULD do it and all I’d have to worry about is themask/tubing problem. It would then be like scuba system. But of coursethen it wouldn’t work for apnea so I’m back to where I started. Isaying that I could tolerate CPAP if it were demand-based (zerodifferential pressure) and if its delivery mechanism were totallynon-intrusive and didn’t touch my face, nose or mouth (like an oxygentent, for example). B ut those two criteria would, admittedly, make CPAPineffective.Finally, the advice to just hang in there and keep trying all thisunpleasant stuff ignores my clear statement that I do not get used tounpleasant things. I have, for example, never acquired a taste foranything I didn’t like at the outset. The longer I force myself toexperience negative things, the worse it gets. It takes more and moreenergy, effort, and discipline….not less and less as many havesuggested. My inability to acquire tolerance for unpleasant thingsexplains why I never could understand the appeal of coffee, tobacco,drugs, or alcohol. Some would say I’ve missed some of life’s morepleasurable things but I rather think the protection this has affordedme is a positive thing.The bottom line is, CPAP and oral appliances are just not the righttherapies for me. I say that with all respect to those who arebenefiting from these therapies. Great for them, but its not for me. And just as I respect those who use these therapies, I feel othersshould respect my assertion that these therapies are not right for me. I know myself well. For a life-long therapy to work for me, it needsto be pleasant, especially at the outset. Long-term it needs to be atleast on the pleasant side of neutral. Oral medications, for instance,work fine for me because they are not unpleasant. Injectablemedications don’t work for me because they are so painful. I can dosurgery if it can be made painless (which I believe is technicallyachieveable, by the way, but rather is it politically achievable).So I am still seeking information on apnea therapies which do notinvolve putting unpleasant physical devices into my face, nose, or mouthwhile trying to sleep for the rest of my life. As I said, I’d considersurgery but given some very unusual pain and medication managementchallenges I have, I rather doubt that any surgeon would agree toprovide apnea surgery on me. I will certainly discuss these options atmy sleep doctor appointment next week though.So if CPAP, oral appliances and surgery are unworkable…what then? Ifno treatment can be offered, what about treating the symptoms? Mycurrent doctors have been silent in answering these questions…that’swhy I have asked this group to share their experiences.KeithNormC wrote:
Keith – I forgot to mention all of the things below <grin>.Beth – IMO, a real great summary!!!!!Tal wrote:
They started me on the lowest pressure the machine could deliver(planning to increase it in a few days), and the fact that the mask they used was the least encumbering one they offered, the technician agreedthat if I was having such huge problems after two days with theseproblems that it wasn’t going to get any easier. the technician probably doesn’t have a clue….has never used CPAPthemselves…. ther have been a number of ppl on this group who htoughthey’d never be able to tollerate something on their face while they sleep, feeling they wouldn’t be able to breathe etc…..but – from memory, ihaven’t heard any of them mention it since getting some good advice fromthis group, like , try watching tv with the mask on (not attached to themachine) so you get comfortable with it in a "day to day" type situation. (that’s just one suggestion)oh….and by the way, when my machine was set at 6.5cm (very low) if i was a little out of breath (which i always was going through the routine ofwashing face and mask and getting into bed – i have other health problems htat make the simplest thing difficult) i would feel like i wasn’t getting enough air at that pressure………so……..it’s just a possibility that having it set at the lowest pressure was making things WORSE for you – not easier I felt I was soincredibly far from being able to tolerable it that it wasn’t worth more sleepless nights and especially more retnal money ($$$!) to keepfighting with it unless they could come up with some significant changes in the setup. It was very clear than must forcing myself to keepbattling with it as it was would be futile. I think what is futile….is giving up…. ever watch star trek? the Borg say "resisstance is futile" but the federation always ended up winning the battle……giving up and not even persisting with defendingthemselves….now that would have been futile! They started me using it while sitting on a chair at the kitchentable. I just sat there and gagged and gagged. It was really awful sothey recommended I lie down. The gagging and positive pressurediscomfort really surprized me…I was not expecting that. I thought it was going to be hard to get used to something hanging on my face, but it was the airflow sensations which really about knocked me over. Try getting used to the mask first with no CPAP attached, get used to having it on your face…distract yourself with something like tv…..or a goodmovie…….. you will breathe with it on just fine through the exhale ports on the front… or even have it loose enough so air gets through the sides too if you’re still worried (you will also be able to breathe through your mouth)….. has anyone had you try nasal pillows? they’re much less prone to cause feelings of claustraphobia – i’m sure someone on this list hassuggested that already, if not, you definately need to look into this,there’s less in contact wtih your face, could make a huge difference. Considering the ultra-low pressure they started me at (a 3 or 5, as Irecall), The technician said later that patients who have such animmediate and extreme reaction, especially at such low pressures, areusually not good candidates for CPAP. like i said earlier, if you were already feelign anxious, and slightly out of breath, this pressure would have felt much too low for you to breathecomfortably (judging by my own experience) – I deal with CPAP just fine once the pressure is higher (or my "out of breathness" has settled down) ….so your tech doesn’t know as much as they think they do These techniques make a lot of sense and certainly sound indicatedfor someone like me. I asked to try these but they refused (the doctorand the insurance company) on the … read more »
Response:
My might has just responded to me by saying that there isn’t amy current technology which can meet my needs and objectives. You don’t have to get insulting about it. Like everyone else, I’m just trying to find my own way to deal with this disease. Keith – Hide quoted text — Show quoted text -Tal wrote: >now you’re just sounding like a spoilt brat who wants everything handed to >them on a platter…..the good things in life always involve hard work, and >often pain! it’s the dififcult things that make us stronger people >My only suggetsion for you now, is cancel your drivers license, and don’t >EVER operate machinery cause you’re going to kill someone by your >stubbourness. >You don’t even want to try, two attempts os NOT enough… but that’s up to >you….do what you like with your own life, but as i just said, don’t risk >the lives of others as well, when you fall asleep at the wheel or whatever, >you will have to suffer the concequences. >And after you’ve quit driving and operating machinery or anything else risky >when you don’t have full concentration or risk causing injury when you fall >asleep….then, all that is left for you to do is pray. God is the only >one that can give you the pain free, trouble free, effort free miracle cure. >I sound a bit mean? well, we’ve tried to help, but you don’t want to be >helped unless it costs you nothing at all…… it’s kinda like they say, >nothing is free…..if it doesn’t cost you financially, it’ll cost you in >effort or persistance or pain…….. you’re NOT going to find your miracle >cure in the medical community OR in this newsgroup…. if you realise that >soon, perhaps you can start to find some answers >Beth >"D. Keith Lamb" <kl…@columbus.rr.com> wrote in message >news:3C15BDC5.6060507@columbus.rr.com… >>I didn’t see Betts post earlier. Most of the things she mentions aren’t >>applicable to me…that is, the things she discusses changing aren’t in >>alignment with the problems I faced. While I’m sure some people have >>the problems she mentions, my actual concerns were a bit oblique >>compared to how she seemed to read into my situation. >>For example, I never said I had claustrophobic feelings…but quite a >>few people seemed to have read this from my postings. My problem with >>the mask and tubing and all the rest is simply the [unpleasant] >>sensations associated with all this stuff touching my face and hanging >>onto me when I’m trying to sleep. Even if I could get ot sleep, the >>instant I turned over I’d make a mess of it all and wake up…then I’d >>throw it against the wall. >>But most of all, I have really big problems with things in my mouth and >>nose…which makes me perplexed at the common suggestion to use nasal >>pillows. There is simply not a chance in the world that would work for >>me. For example, I cannot tolerate a nasal oxygen cannula…how could >>I stand something that stuck up in my nose? Sheesh, my hats off to >>those who can do stuff like this…but I sure don’t know how they can >>stand it…I really don’t. >>As to pressure, it was positive pressure, particularly on exhalation, >>that I couldn’t’ stand. So advice to increase the pressure makes zero >>sense to me. I believe if the pressure where reduced to 0 >>(demand-based) that I COULD do it and all I’d have to worry about is the >>mask/tubing problem. It would then be like scuba system. But of course >>then it wouldn’t work for apnea so I’m back to where I started. I >>saying that I could tolerate CPAP if it were demand-based (zero >>differential pressure) and if its delivery mechanism were totally >>non-intrusive and didn’t touch my face, nose or mouth (like an oxygen >>tent, for example). But those two criteria would, admittedly, make CPAP >>ineffective. >>Finally, the advice to just hang in there and keep trying all this >>unpleasant stuff ignores my clear statement that I do not get used to >>unpleasant things. I have, for example, never acquired a taste for >>anything I didn’t like at the outset. The longer I force myself to >>experience negative things, the worse it gets. It takes more and more >>energy, effort, and discipline….not less and less as many have >>suggested. My inability to acquire tolerance for unpleasant things >>explains why I never could understand the appeal of coffee, tobacco, >>drugs, or alcohol. Some would say I’ve missed some of life’s more >>pleasurable things but I rather think the protection this has afforded >>me is a positive thing. >>The bottom line is, CPAP and oral appliances are just not the right >>therapies for me. I say that with all respect to those who are >>benefiting from these therapies. Great for them, but its not for me. >> And just as I respect those who use these therapies, I feel others >>should respect my assertion that these therapies are not right for me. >> I know myself well. For a life-long therapy to work for me, it needs >>to be pleasant, especially at the outset. Long-term it needs to be at >>least on the pleasant side of neutral. Oral medications, for instance, >>work fine for me because they are not unpleasant. Injectable >>medications don’t work for me because they are so painful. I can do >>surgery if it can be made painless (which I believe is technically >>achieveable, by the way, but rather is it politically achievable). >>So I am still seeking information on apnea therapies which do not >>involve putting unpleasant physical devices into my face, nose, or mouth >>while trying to sleep for the rest of my life. As I said, I’d consider >>surgery but given some very unusual pain and medication management >>challenges I have, I rather doubt that any surgeon would agree to >>provide apnea surgery on me. I will certainly discuss these options at >>my sleep doctor appointment next week though. >>So if CPAP, oral appliances and surgery are unworkable…what then? If >>no treatment can be offered, what about treating the symptoms? My >>current doctors have been silent in answering these questions…that’s >>why I have asked this group to share their experiences. >>Keith >>NormC wrote: >>>Keith – I forgot to mention all of the things below <grin>. >>>Beth – IMO, a real great summary!!!!! >>>Tal wrote: >>>>>They started me on the lowest pressure the machine could deliver >>>>>(planning to increase it in a few days), and the fact that the mask >they >>>>>used was the least encumbering one they offered, the technician agreed >>>>>that if I was having such huge problems after two days with these >>>>>problems that it wasn’t going to get any easier. >>>>the technician probably doesn’t have a clue….has never used CPAP >>>>themselves…. ther have been a number of ppl on this group who htough >>>>they’d never be able to tollerate something on their face while they >sleep, >>>>feeling they wouldn’t be able to breathe etc…..but – from memory, i >>>>haven’t heard any of them mention it since getting some good advice from >>>>this group, like , try watching tv with the mask on (not attached to the >>>>machine) so you get comfortable with it in a "day to day" type >situation. >>>>(that’s just one suggestion) >>>>oh….and by the way, when my machine was set at 6.5cm (very low) if i >was a >>>>little out of breath (which i always was going through the routine of >>>>washing face and mask and getting into bed – i have other health >problems >>>>htat make the simplest thing difficult) i would feel like i wasn’t >getting >>>>enough air at that pressure………so……..it’s just a possibility >that >>>>having it set at the lowest pressure was making things WORSE for you – >not >>>>easier >>>>>I felt I was so >>>>>incredibly far from being able to tolerable it that it wasn’t worth >more >>>>>sleepless nights and especially more retnal money ($$$!) to keep >>>>>fighting with it unless they could come up with some significant >changes >>>>>in the setup. It was very clear than must forcing myself to keep >>>>>battling with it as it was would be futile. >>>>I think what is futile….is giving up…. ever watch star trek? the >Borg >>>>say "resisstance is futile" but the federation always ended up winning >the >>>>battle……giving up and not even persisting with defending >>>>themselves….now that would have been futile! >>>>> They started me using it while sitting on a chair at the kitchen >>>>>table. I just sat there and gagged and gagged. It was really awful so >>>>>they recommended I lie down. The gagging and positive pressure >>>>>discomfort really surprized me…I was not expecting that. I thought >it >>>>>was going to be hard to get used to something hanging on my face, but >it >>>>>was the airflow sensations which really about knocked me over. >>>>Try getting used to the mask first with no CPAP attached, get used to >having >>>>it on your face…distract yourself with something like tv…..or a good >>>>movie…….. you will breathe with it on just fine through the exhale >ports >>>>on the front… or even have it loose enough so air gets through the >sides >>>>too if you’re still worried (you will also be able to breathe through >your >>>>mouth)….. has anyone had you try nasal pillows? they’re much less >prone >>>>to cause feelings of claustraphobia – i’m sure someone on this list has >>>>suggested that already, if not, you definately need to look into this, >>>>there’s less in contact wtih your face, could make a huge difference. >>>>>Considering the ultra-low pressure they started me at (a 3 or 5, as I >>>>>recall), The technician said later that patients who have such an >>>>>immediate and extreme reaction, especially at such low pressures, are >>>>>usually not good candidates for CPAP. >>>>like i said earlier, if you were already feelign anxious, and slightly
… read more »
Response:
Hi Keith: I would surmise that all of us in this NG have overcome various hurdles in dealing with CPAP as a prescribed treatment for Obstructive Sleep Apnea. Even at its best this device is a cumbersome thing to have attached to our face for 1/3 of our day (life?) . I was just trying to say don’t give up and keep posting your experience and who knows someone here may have an experience that could help you. I’m glad I had the group and persevered. There are benefits if you can spend a part of the night with the thing. Good Luck John – Hide quoted text — Show quoted text -D. Keith Lamb wrote: > If the problem a patient has with CPAP is poor mask fitting or > claustrophobia, I can see how trying different masks and techniques > could help. In other words, I can see that there are situations in > which working through some options could help. > But my problem with CPAP was much more fundamental. I don’t see how > trying different brands, etc would change anything. My problem is two > fold: 1) I cannot tolerate the thought or sensations involved in being > hooked up to something while trying to sleep, especially something > touching my face, and 2) I cannot tolerate the sensations of positive > airflow pressure. Even if there was some sort of way to keep the > airflow to neutral until I was sleep, there is the problem of having > something on my face which prevents me from sleeping in the first > place. These two problems together kinda acted in concert to ensure > that approaching either problem alone won’t work. > If there was some way to completely avoid anything on my face or any > positive pressure, then somehow very slowly introducing these > sensations when I was in a state of very deep alseep then I suppose > there is a possibility it could work for me. But as soon as I rolled > over and hit the mask/head gear I’d wake up. So maybe I’d need some > sort of super-powerful sleeping pill which would force me to stay sleep? > I am the type of person who finds that repeating unpleasant > experiences makes them harder and harder to tolerate, not easier and > easier. In order words, I have a long history of not being able to > ‘get used’ to unpleasant things. It explains why I never could > tolerate things like alcohol, coffee or cigarettes. > Keith > John Buffett wrote: >> I have to agree with Buddy as my own experience was that I tried CPAP >> for a month and could not tolerate it. My Doctor took me off it and >> treated my other sleep disorder (Restless Legs Syndrome). When that >> was under control he put me back on CPAP and I went to a different >> supplier to experience a range of equipment and products. At first it >> did not look like I could tolerate it as the claustrophobic effects >> were returning. I would literally wake up in the night and rip this >> thing off my face as I thought that I was about to suffocate. I got a >> different mask and a slight bump up in the pressure and have over >> time and with a lot of work and determination learned to tolerate >> this cumbersome device. It was worth the effort and today I would not >> think of not using it. >> I will also add at his time that I lurked on this newsgroup and >> visited many sites on the net to learn as much as I can about my >> sleep diorders. >> This group is a great deal of help. If I did not have input from >> others I might stiill be struggling along without CPAP. >> Hang in there: >> John >> Buddy Matlosz wrote: >>>"D. Keith Lamb" <kl…@columbus.rr.com> <mailto:kl…@columbus.rr.com> wrote in message >>>news:3C12782C.4010201@columbus.rr.com… >>>>As I have indicated before in this group, I have been unable to access >>>>any effective treatment for OSA, finding them all intolerable. >>>>In a week I have a follow up meeting with my sleep doctor to discuss the >>>>results of my recent sleep study. I intend to discuss shifting our >>>>efforts from our long-standing-but-futile effort to ‘fix’ the problem to >>>>one of simply treating the symptoms. The way I figure it, if you can’t >>>>fix the disease then at least make the symptoms as livable as possible. >>>Keith, >>>How long did you try CPAP before you declared it "intolerable"? Very few >>>people take to it right away – it took me a few days and I think that makes >>>me one of the lucky ones. >>>If your aversion is to the mask, there are many alternative masks available, >>>or sometimes it’s just a matter of fiddling with the straps and adjustments >>>and/or using a swing arm to make it more comfortable. People have also >>>suggested wearing the mask while reading or watching TV in a chair for >>>awhile (even without the machine on) to get used to it gradually before >>>trying to sleep with it. >>>If it’s exhaling against pressure you find intolerable, consider biPAP, >>>autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as >>>to merit all the effort you can muster. It sounds like you’ve got yourself >>>completely talked out of trying it again – do yourself and your loved ones a >>>favor, adopt a more positive at >>>ti >>>tude, and keep trying. >>>Good luck, >>>Buddy
Response:
On Wed, 12 Dec 2001 00:35:40 +1100, "Tal" <ta…@tpg.com.au> wrote about a certain poster: >now you’re just sounding like a spoilt brat who wants everything handed to >them on a platter…..the good things in life always involve hard work, and >often pain! it’s the dififcult things that make us stronger people
Here, here! Some people need to be reminded that they are dealing with a DIS-EASE… and it’s by nature DIS-EASING!
Response:
On Tue, 11 Dec 2001 08:01:44 GMT, "D. Keith Lamb" <kl…@columbus.rr.com> wrote: >I saying that I could tolerate CPAP if it were demand-based (zero >differential pressure) and if its delivery mechanism were totally >non-intrusive and didn’t touch my face, nose or mouth (like an >oxygen tent, for example). But those two criteria would, >admittedly, make CPAP ineffective.
Then it wouldn’t be CPAP. There’s a structural problem here. It requires CPAP. >Finally, the advice to just hang in there and keep trying all this >unpleasant stuff ignores my clear statement that I do not get used to >unpleasant things.
We can’t change your medical prognosis. We can’t change your attitude, either. But we can tell you "if you don’t, this is probably what will happen." So can your doctors. Don’t be surprised if there’s a fait accompli. If you’re lucky, the cardiovascular damage will be partly recoverable. > And just as I respect those who use these therapies, I feel others >should respect my assertion that these therapies are not right for me. > I know myself well. For a life-long therapy to work for me, it needs >to be pleasant, especially at the outset.
Well, there are basically no other therapies. >Oral medications, for instance, work fine for me because they are >not unpleasant. Injectable medications don’t work for me >because they are so painful.
I just hope you never get insulin-dependent diabetes. It’ll be interesting to see your case: the insulin won’t work because it’s injected. The Mayo Clinic would probably like to study this. >I can do surgery if it can be made painless (which I believe is >technically achieveable, by the way, but rather is it politically >achievable).
Not technically acheivable with the current state of the art: respiratory depression (which can result in politically unacceptable sequelae, namely death of the patient) is a constant concern. Surgery also involves lots of needles. If it was a lower part of the body, a PCA pump would work extremely well, but this sure isn’t the case for apnea surgery. >As I said, I’d consider surgery but given some very unusual pain >and medication management challenges I have, I rather doubt that >any surgeon would agree to provide apnea surgery on me.
What you are saying is "if you can do surgery without the complications of surgery (pain and medication), surgery will be fine." Fact of Life: Harry Potter ain’t gonna do surgery on you with his magic wand. >If no treatment can be offered, what about treating the symptoms? My >current doctors have been silent in answering these questions…
Doctors are used to patients who want to do nothing… they aren’t that used to patients who request a blatant violation of the Hippocratic Oath ("first, do no harm"). Stimulants would be dangerous (you have enough cardiovascular damage going on now without pouring gasoline on the fire). I believe that no ethical doctor would prescribe them.
Response:
"D. Keith Lamb" <kl…@columbus.rr.com> wrote: >But most of all, I have really big problems with things in my mouth and >nose…which makes me perplexed at the common suggestion to use nasal >pillows. There is simply not a chance in the world that would work for >me. For example, I cannot tolerate a nasal oxygen cannula…how could >I stand something that stuck up in my nose?
Just for the record, pillows aren’t at all like sticking a finger or something up your nose. There’s a little "bud" that goes very sightly into your nostrils to align them, but the seal itself is to the nostril entrance. Tom
Response:
now you’re just sounding like a spoilt brat who wants everything handed to them on a platter…..the good things in life always involve hard work, and often pain! it’s the dififcult things that make us stronger people My only suggetsion for you now, is cancel your drivers license, and don’t EVER operate machinery cause you’re going to kill someone by your stubbourness. You don’t even want to try, two attempts os NOT enough… but that’s up to you….do what you like with your own life, but as i just said, don’t risk the lives of others as well, when you fall asleep at the wheel or whatever, you will have to suffer the concequences. And after you’ve quit driving and operating machinery or anything else risky when you don’t have full concentration or risk causing injury when you fall asleep….then, all that is left for you to do is pray. God is the only one that can give you the pain free, trouble free, effort free miracle cure. I sound a bit mean? well, we’ve tried to help, but you don’t want to be helped unless it costs you nothing at all…… it’s kinda like they say, nothing is free…..if it doesn’t cost you financially, it’ll cost you in effort or persistance or pain…….. you’re NOT going to find your miracle cure in the medical community OR in this newsgroup…. if you realise that soon, perhaps you can start to find some answers Beth "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message news:3C15BDC5.6060507@columbus.rr.com… – Hide quoted text — Show quoted text -> I didn’t see Betts post earlier. Most of the things she mentions aren’t > applicable to me…that is, the things she discusses changing aren’t in > alignment with the problems I faced. While I’m sure some people have > the problems she mentions, my actual concerns were a bit oblique > compared to how she seemed to read into my situation. > For example, I never said I had claustrophobic feelings…but quite a > few people seemed to have read this from my postings. My problem with > the mask and tubing and all the rest is simply the [unpleasant] > sensations associated with all this stuff touching my face and hanging > onto me when I’m trying to sleep. Even if I could get ot sleep, the > instant I turned over I’d make a mess of it all and wake up…then I’d > throw it against the wall. > But most of all, I have really big problems with things in my mouth and > nose…which makes me perplexed at the common suggestion to use nasal > pillows. There is simply not a chance in the world that would work for > me. For example, I cannot tolerate a nasal oxygen cannula…how could > I stand something that stuck up in my nose? Sheesh, my hats off to > those who can do stuff like this…but I sure don’t know how they can > stand it…I really don’t. > As to pressure, it was positive pressure, particularly on exhalation, > that I couldn’t’ stand. So advice to increase the pressure makes zero > sense to me. I believe if the pressure where reduced to 0 > (demand-based) that I COULD do it and all I’d have to worry about is the > mask/tubing problem. It would then be like scuba system. But of course > then it wouldn’t work for apnea so I’m back to where I started. I > saying that I could tolerate CPAP if it were demand-based (zero > differential pressure) and if its delivery mechanism were totally > non-intrusive and didn’t touch my face, nose or mouth (like an oxygen > tent, for example). But those two criteria would, admittedly, make CPAP > ineffective. > Finally, the advice to just hang in there and keep trying all this > unpleasant stuff ignores my clear statement that I do not get used to > unpleasant things. I have, for example, never acquired a taste for > anything I didn’t like at the outset. The longer I force myself to > experience negative things, the worse it gets. It takes more and more > energy, effort, and discipline….not less and less as many have > suggested. My inability to acquire tolerance for unpleasant things > explains why I never could understand the appeal of coffee, tobacco, > drugs, or alcohol. Some would say I’ve missed some of life’s more > pleasurable things but I rather think the protection this has afforded > me is a positive thing. > The bottom line is, CPAP and oral appliances are just not the right > therapies for me. I say that with all respect to those who are > benefiting from these therapies. Great for them, but its not for me. > And just as I respect those who use these therapies, I feel others > should respect my assertion that these therapies are not right for me. > I know myself well. For a life-long therapy to work for me, it needs > to be pleasant, especially at the outset. Long-term it needs to be at > least on the pleasant side of neutral. Oral medications, for instance, > work fine for me because they are not unpleasant. Injectable > medications don’t work for me because they are so painful. I can do > surgery if it can be made painless (which I believe is technically > achieveable, by the way, but rather is it politically achievable). > So I am still seeking information on apnea therapies which do not > involve putting unpleasant physical devices into my face, nose, or mouth > while trying to sleep for the rest of my life. As I said, I’d consider > surgery but given some very unusual pain and medication management > challenges I have, I rather doubt that any surgeon would agree to > provide apnea surgery on me. I will certainly discuss these options at > my sleep doctor appointment next week though. > So if CPAP, oral appliances and surgery are unworkable…what then? If > no treatment can be offered, what about treating the symptoms? My > current doctors have been silent in answering these questions…that’s > why I have asked this group to share their experiences. > Keith > NormC wrote: > >Keith – I forgot to mention all of the things below <grin>. > >Beth – IMO, a real great summary!!!!! > >Tal wrote: > >>> They started me on the lowest pressure the machine could deliver > >>>(planning to increase it in a few days), and the fact that the mask they > >>>used was the least encumbering one they offered, the technician agreed > >>>that if I was having such huge problems after two days with these > >>>problems that it wasn’t going to get any easier. > >>the technician probably doesn’t have a clue….has never used CPAP > >>themselves…. ther have been a number of ppl on this group who htough > >>they’d never be able to tollerate something on their face while they sleep, > >>feeling they wouldn’t be able to breathe etc…..but – from memory, i > >>haven’t heard any of them mention it since getting some good advice from > >>this group, like , try watching tv with the mask on (not attached to the > >>machine) so you get comfortable with it in a "day to day" type situation. > >>(that’s just one suggestion) > >>oh….and by the way, when my machine was set at 6.5cm (very low) if i was a > >>little out of breath (which i always was going through the routine of > >>washing face and mask and getting into bed – i have other health problems > >>htat make the simplest thing difficult) i would feel like i wasn’t getting > >>enough air at that pressure………so……..it’s just a possibility that > >>having it set at the lowest pressure was making things WORSE for you – not > >>easier > >>>I felt I was so > >>>incredibly far from being able to tolerable it that it wasn’t worth more > >>>sleepless nights and especially more retnal money ($$$!) to keep > >>>fighting with it unless they could come up with some significant changes > >>>in the setup. It was very clear than must forcing myself to keep > >>>battling with it as it was would be futile. > >>I think what is futile….is giving up…. ever watch star trek? the Borg > >>say "resisstance is futile" but the federation always ended up winning the > >>battle……giving up and not even persisting with defending > >>themselves….now that would have been futile! > >>> They started me using it while sitting on a chair at the kitchen > >>>table. I just sat there and gagged and gagged. It was really awful so > >>>they recommended I lie down. The gagging and positive pressure > >>>discomfort really surprized me…I was not expecting that. I thought it > >>>was going to be hard to get used to something hanging on my face, but it > >>>was the airflow sensations which really about knocked me over. > >>Try getting used to the mask first with no CPAP attached, get used to having > >>it on your face…distract yourself with something like tv…..or a good > >>movie…….. you will breathe with it on just fine through the exhale ports > >>on the front… or even have it loose enough so air gets through the sides > >>too if you’re still worried (you will also be able to breathe through your > >>mouth)….. has anyone had you try nasal pillows? they’re much less prone > >>to cause feelings of claustraphobia – i’m sure someone on this list has > >>suggested that already, if not, you definately need to look into this, > >>there’s less in contact wtih your face, could make a huge difference. > >>> Considering the ultra-low pressure they started me at (a 3 or 5, as I > >>>recall), The technician said later that patients who have such an > >>>immediate and extreme reaction, especially at such low pressures, are > >>>usually not good candidates for CPAP. > >>like i said earlier, if you were already feelign anxious, and slightly out > >>of breath, this pressure would have felt much too low for you to breathe > >>comfortably (judging by my own experience) – I deal with CPAP just fine once > >>the pressure is higher (or my "out of breathness" has settled down) ….so > >>your tech doesn’t know as much as they think they do > >>> These techniques make a lot of sense and certainly sound indicated > >>>for someone like me. I asked to try these but they refused (the doctor > >>>and the
… read more »
Response:
I didn’t see Betts post earlier. Most of the things she mentions aren’t applicable to me…that is, the things she discusses changing aren’t in alignment with the problems I faced. While I’m sure some people have the problems she mentions, my actual concerns were a bit oblique compared to how she seemed to read into my situation. For example, I never said I had claustrophobic feelings…but quite a few people seemed to have read this from my postings. My problem with the mask and tubing and all the rest is simply the [unpleasant] sensations associated with all this stuff touching my face and hanging onto me when I’m trying to sleep. Even if I could get ot sleep, the instant I turned over I’d make a mess of it all and wake up…then I’d throw it against the wall. But most of all, I have really big problems with things in my mouth and nose…which makes me perplexed at the common suggestion to use nasal pillows. There is simply not a chance in the world that would work for me. For example, I cannot tolerate a nasal oxygen cannula…how could I stand something that stuck up in my nose? Sheesh, my hats off to those who can do stuff like this…but I sure don’t know how they can stand it…I really don’t. As to pressure, it was positive pressure, particularly on exhalation, that I couldn’t’ stand. So advice to increase the pressure makes zero sense to me. I believe if the pressure where reduced to 0 (demand-based) that I COULD do it and all I’d have to worry about is the mask/tubing problem. It would then be like scuba system. But of course then it wouldn’t work for apnea so I’m back to where I started. I saying that I could tolerate CPAP if it were demand-based (zero differential pressure) and if its delivery mechanism were totally non-intrusive and didn’t touch my face, nose or mouth (like an oxygen tent, for example). But those two criteria would, admittedly, make CPAP ineffective. Finally, the advice to just hang in there and keep trying all this unpleasant stuff ignores my clear statement that I do not get used to unpleasant things. I have, for example, never acquired a taste for anything I didn’t like at the outset. The longer I force myself to experience negative things, the worse it gets. It takes more and more energy, effort, and discipline….not less and less as many have suggested. My inability to acquire tolerance for unpleasant things explains why I never could understand the appeal of coffee, tobacco, drugs, or alcohol. Some would say I’ve missed some of life’s more pleasurable things but I rather think the protection this has afforded me is a positive thing. The bottom line is, CPAP and oral appliances are just not the right therapies for me. I say that with all respect to those who are benefiting from these therapies. Great for them, but its not for me. And just as I respect those who use these therapies, I feel others should respect my assertion that these therapies are not right for me. I know myself well. For a life-long therapy to work for me, it needs to be pleasant, especially at the outset. Long-term it needs to be at least on the pleasant side of neutral. Oral medications, for instance, work fine for me because they are not unpleasant. Injectable medications don’t work for me because they are so painful. I can do surgery if it can be made painless (which I believe is technically achieveable, by the way, but rather is it politically achievable). So I am still seeking information on apnea therapies which do not involve putting unpleasant physical devices into my face, nose, or mouth while trying to sleep for the rest of my life. As I said, I’d consider surgery but given some very unusual pain and medication management challenges I have, I rather doubt that any surgeon would agree to provide apnea surgery on me. I will certainly discuss these options at my sleep doctor appointment next week though. So if CPAP, oral appliances and surgery are unworkable…what then? If no treatment can be offered, what about treating the symptoms? My current doctors have been silent in answering these questions…that’s why I have asked this group to share their experiences. Keith – Hide quoted text — Show quoted text -NormC wrote: >Keith – I forgot to mention all of the things below <grin>. >Beth – IMO, a real great summary!!!!! >Tal wrote: >>> They started me on the lowest pressure the machine could deliver >>>(planning to increase it in a few days), and the fact that the mask they >>>used was the least encumbering one they offered, the technician agreed >>>that if I was having such huge problems after two days with these >>>problems that it wasn’t going to get any easier. >>the technician probably doesn’t have a clue….has never used CPAP >>themselves…. ther have been a number of ppl on this group who htough >>they’d never be able to tollerate something on their face while they sleep, >>feeling they wouldn’t be able to breathe etc…..but – from memory, i >>haven’t heard any of them mention it since getting some good advice from >>this group, like , try watching tv with the mask on (not attached to the >>machine) so you get comfortable with it in a "day to day" type situation. >>(that’s just one suggestion) >>oh….and by the way, when my machine was set at 6.5cm (very low) if i was a >>little out of breath (which i always was going through the routine of >>washing face and mask and getting into bed – i have other health problems >>htat make the simplest thing difficult) i would feel like i wasn’t getting >>enough air at that pressure………so……..it’s just a possibility that >>having it set at the lowest pressure was making things WORSE for you – not >>easier >>>I felt I was so >>>incredibly far from being able to tolerable it that it wasn’t worth more >>>sleepless nights and especially more retnal money ($$$!) to keep >>>fighting with it unless they could come up with some significant changes >>>in the setup. It was very clear than must forcing myself to keep >>>battling with it as it was would be futile. >>I think what is futile….is giving up…. ever watch star trek? the Borg >>say "resisstance is futile" but the federation always ended up winning the >>battle……giving up and not even persisting with defending >>themselves….now that would have been futile! >>> They started me using it while sitting on a chair at the kitchen >>>table. I just sat there and gagged and gagged. It was really awful so >>>they recommended I lie down. The gagging and positive pressure >>>discomfort really surprized me…I was not expecting that. I thought it >>>was going to be hard to get used to something hanging on my face, but it >>>was the airflow sensations which really about knocked me over. >>Try getting used to the mask first with no CPAP attached, get used to having >>it on your face…distract yourself with something like tv…..or a good >>movie…….. you will breathe with it on just fine through the exhale ports >>on the front… or even have it loose enough so air gets through the sides >>too if you’re still worried (you will also be able to breathe through your >>mouth)….. has anyone had you try nasal pillows? they’re much less prone >>to cause feelings of claustraphobia – i’m sure someone on this list has >>suggested that already, if not, you definately need to look into this, >>there’s less in contact wtih your face, could make a huge difference. >>> Considering the ultra-low pressure they started me at (a 3 or 5, as I >>>recall), The technician said later that patients who have such an >>>immediate and extreme reaction, especially at such low pressures, are >>>usually not good candidates for CPAP. >>like i said earlier, if you were already feelign anxious, and slightly out >>of breath, this pressure would have felt much too low for you to breathe >>comfortably (judging by my own experience) – I deal with CPAP just fine once >>the pressure is higher (or my "out of breathness" has settled down) ….so >>your tech doesn’t know as much as they think they do >>> These techniques make a lot of sense and certainly sound indicated >>>for someone like me. I asked to try these but they refused (the doctor >>>and the insurance company) on the grounds that Bipap only helps when the >>>pressure is so high that they can make a meaningful difference between >>>inhaling and exhaling. They said that no Bipap machine could >>>distinguish between the low pressure I was on. I would have needed >>>something like 3/0, they said there was no such thing and even if there >>>was it woudln’t make a hill of beans of difference. Ditto for autopap >>>and ramping…the changes would be so small that it wouldn’t make enough >>>difference. I was told that these techniques are for patients whos >>>pressures are very high, not very low. And that was another issue…if >>>I couldn’t stand a 3, how would I be able to do 10? >>As i’ve said twice already (can’ you tell i’m trying to emphasise this >>point?) too low a pressure may make you feel worse, NOT better….(for other >>ppl reading…..i mean in reference to feeling comfortable breathing, not >>acutal CPAP treatment) >>>And as time goes >>>on, they said the pressures normally would have to be increased. In >>>other words, as treatment progressed the pressures couldn’t be expected >>>to DEcrease, which is what I definitely would want and need. The >>>prospect of having to face increasing pressure (with its associated >>>discomfort) is just not a workable prospect in my mind. >>It’s not terribly uncommon for people to have their pressure >>DE-creased….particularly if they loose weight >>> The ramping idea sounds like a move in the right direction but again >>>they turned me down. They said that ramping only helps if you can get >>>to sleep first, and it even then it won’t help if the patient >>>immediately wakes up (which is what
… read more »
Response:
Keith – I forgot to mention all of the things below <grin>. Beth – IMO, a real great summary!!!!! – Hide quoted text — Show quoted text -Tal wrote: > > They started me on the lowest pressure the machine could deliver > > (planning to increase it in a few days), and the fact that the mask they > > used was the least encumbering one they offered, the technician agreed > > that if I was having such huge problems after two days with these > > problems that it wasn’t going to get any easier. > the technician probably doesn’t have a clue….has never used CPAP > themselves…. ther have been a number of ppl on this group who htough > they’d never be able to tollerate something on their face while they sleep, > feeling they wouldn’t be able to breathe etc…..but – from memory, i > haven’t heard any of them mention it since getting some good advice from > this group, like , try watching tv with the mask on (not attached to the > machine) so you get comfortable with it in a "day to day" type situation. > (that’s just one suggestion) > oh….and by the way, when my machine was set at 6.5cm (very low) if i was a > little out of breath (which i always was going through the routine of > washing face and mask and getting into bed – i have other health problems > htat make the simplest thing difficult) i would feel like i wasn’t getting > enough air at that pressure………so……..it’s just a possibility that > having it set at the lowest pressure was making things WORSE for you – not > easier > > I felt I was so > > incredibly far from being able to tolerable it that it wasn’t worth more > > sleepless nights and especially more retnal money ($$$!) to keep > > fighting with it unless they could come up with some significant changes > > in the setup. It was very clear than must forcing myself to keep > > battling with it as it was would be futile. > I think what is futile….is giving up…. ever watch star trek? the Borg > say "resisstance is futile" but the federation always ended up winning the > battle……giving up and not even persisting with defending > themselves….now that would have been futile! > > They started me using it while sitting on a chair at the kitchen > > table. I just sat there and gagged and gagged. It was really awful so > > they recommended I lie down. The gagging and positive pressure > > discomfort really surprized me…I was not expecting that. I thought it > > was going to be hard to get used to something hanging on my face, but it > > was the airflow sensations which really about knocked me over. > Try getting used to the mask first with no CPAP attached, get used to having > it on your face…distract yourself with something like tv…..or a good > movie…….. you will breathe with it on just fine through the exhale ports > on the front… or even have it loose enough so air gets through the sides > too if you’re still worried (you will also be able to breathe through your > mouth)….. has anyone had you try nasal pillows? they’re much less prone > to cause feelings of claustraphobia – i’m sure someone on this list has > suggested that already, if not, you definately need to look into this, > there’s less in contact wtih your face, could make a huge difference. > > Considering the ultra-low pressure they started me at (a 3 or 5, as I > > recall), The technician said later that patients who have such an > > immediate and extreme reaction, especially at such low pressures, are > > usually not good candidates for CPAP. > like i said earlier, if you were already feelign anxious, and slightly out > of breath, this pressure would have felt much too low for you to breathe > comfortably (judging by my own experience) – I deal with CPAP just fine once > the pressure is higher (or my "out of breathness" has settled down) ….so > your tech doesn’t know as much as they think they do > > These techniques make a lot of sense and certainly sound indicated > > for someone like me. I asked to try these but they refused (the doctor > > and the insurance company) on the grounds that Bipap only helps when the > > pressure is so high that they can make a meaningful difference between > > inhaling and exhaling. They said that no Bipap machine could > > distinguish between the low pressure I was on. I would have needed > > something like 3/0, they said there was no such thing and even if there > > was it woudln’t make a hill of beans of difference. Ditto for autopap > > and ramping…the changes would be so small that it wouldn’t make enough > > difference. I was told that these techniques are for patients whos > > pressures are very high, not very low. And that was another issue…if > > I couldn’t stand a 3, how would I be able to do 10? > As i’ve said twice already (can’ you tell i’m trying to emphasise this > point?) too low a pressure may make you feel worse, NOT better….(for other > ppl reading…..i mean in reference to feeling comfortable breathing, not > acutal CPAP treatment) > > And as time goes > > on, they said the pressures normally would have to be increased. In > > other words, as treatment progressed the pressures couldn’t be expected > > to DEcrease, which is what I definitely would want and need. The > > prospect of having to face increasing pressure (with its associated > > discomfort) is just not a workable prospect in my mind. > It’s not terribly uncommon for people to have their pressure > DE-creased….particularly if they loose weight > > The ramping idea sounds like a move in the right direction but again > > they turned me down. They said that ramping only helps if you can get > > to sleep first, and it even then it won’t help if the patient > > immediately wakes up (which is what would happen to me, even if I could > > get to sleep). I suggested they knock me out cold first with some sort > > of super-powerful sleeping pill or anesthetic. They refused this saying > > it wouldn’t be safe and drugging an apnea patient’s body into submission > > would makes things worse. (I have a world-class tolerance to sleeping > > drugs so they are probably right, I would need some hyper-powerful stuff > > to force me into a state where CPAP would be passable for me.). > This is what we’ve been trying to tell you in relation to you wanting to use > pills to treat your daytime sleepiness…. pills will only make things much > worse, espeically while you’re sleeping, anything that relaxes your muscles > more, will make the apnea worse…. and anythign that will prevent you from > waking up when you need to breathe….will kill you. > > The bottom line is that I think I could again try it if three things > > were different: 1) if we used some sort of auto/bipap/ramping feature, > > 2) we could come up with some tolerable mask arranagement, and 3) some > > ultra-powerful sleep-forcing medication could be used (at least > > initially). But I couldn’t get cooperation from the providers in > > support of any of these changes. > 1. I would suggest trying a higher pressure to start with (I guess they > didnt’ determine your needed pressure if you couldn’t keep the mask on?) and > see if that helps…..but before even gettinig to that stage, get used to > haveing something on your face while you go about your daily activities….. > 2.. Find out all you can about nasal pillows and see if that will help you > feel less claustraphobic…. ppl here will help you out with that if you > ask….. i’ve never used nasal pillows so i can’t offer much advice in that > area, other than people say it’s great if you’re claustraphobic cause less > comes in contact with your face. > 3. Follow steps one and two and this won’t be necessary… as stated > before, woudl make things worse anyway……may even kill you,….and that > sure wouldnt’ be any answer….. > > After the difficult first two nights and all the issues surrounding > > my experience as well as better understanding of my personality, the > > technician and physician and DME company (and insurance company) > > concluded that I was one of the patients for whom CPAP just wasn’t going > > to work. Even if I could get through the first few days they believed > > that I would stop using it. I would have to agree that their concerns > > are well-founded. > your tech, doc and DME haven’t been in your situation, probably haven’t had > apnea themselves and dont’ know what it’s like to live with, giving up isn’t > going to help you, they should realise that……sad thing is, most docs > don’t know the kind of things the people in this newsgroup know in terms of > what can help you become CPAP compliant…. in my personal experience (with > areas other than apnea) docs give up way too easily sometimes…… if it > looks like it’s going to be hard work for them or they have no immediate > answers………"see ya later, nothing we can do" …….. that’s not good > enough, you have a serious health problem and it’s up to your medical > professionals to help you deal with it in the best possible way, seems to me > like htey’re not doing their job. > > I have since changed sleep doctors. The new guy seems even less > > willing to consider extreme approaches. He seems to be of the view that > > CPAP isn’t right for a patient who would need these types of > > interventions – he views CPAP was something that the patient either > > takes to or they don’t. Unfortunately he doesn’t seem excited or open > > to pursuing any other type of therapy or even simply just symptom > > relief. He just keeps saying that CPAP is the treatment for apnea, end > > of discussion. If I can’t do CPAP then there isn’t anything they can do > > for me. > Your suggested method of symptom relief may well kill you, that’s why sleep > docs aren’t about to encourage it….. i can’t blame them for that, tho i > can understand how you’re feeling, i deal with excessive fatigue and other > symptoms and
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Response:
> They started me on the lowest pressure the machine could deliver > (planning to increase it in a few days), and the fact that the mask they > used was the least encumbering one they offered, the technician agreed > that if I was having such huge problems after two days with these > problems that it wasn’t going to get any easier.
the technician probably doesn’t have a clue….has never used CPAP themselves…. ther have been a number of ppl on this group who htough they’d never be able to tollerate something on their face while they sleep, feeling they wouldn’t be able to breathe etc…..but – from memory, i haven’t heard any of them mention it since getting some good advice from this group, like , try watching tv with the mask on (not attached to the machine) so you get comfortable with it in a "day to day" type situation. (that’s just one suggestion) oh….and by the way, when my machine was set at 6.5cm (very low) if i was a little out of breath (which i always was going through the routine of washing face and mask and getting into bed – i have other health problems htat make the simplest thing difficult) i would feel like i wasn’t getting enough air at that pressure………so……..it’s just a possibility that having it set at the lowest pressure was making things WORSE for you – not easier > I felt I was so > incredibly far from being able to tolerable it that it wasn’t worth more > sleepless nights and especially more retnal money ($$$!) to keep > fighting with it unless they could come up with some significant changes > in the setup. It was very clear than must forcing myself to keep > battling with it as it was would be futile.
I think what is futile….is giving up…. ever watch star trek? the Borg say "resisstance is futile" but the federation always ended up winning the battle……giving up and not even persisting with defending themselves….now that would have been futile! > They started me using it while sitting on a chair at the kitchen > table. I just sat there and gagged and gagged. It was really awful so > they recommended I lie down. The gagging and positive pressure > discomfort really surprized me…I was not expecting that. I thought it > was going to be hard to get used to something hanging on my face, but it > was the airflow sensations which really about knocked me over.
Try getting used to the mask first with no CPAP attached, get used to having it on your face…distract yourself with something like tv…..or a good movie…….. you will breathe with it on just fine through the exhale ports on the front… or even have it loose enough so air gets through the sides too if you’re still worried (you will also be able to breathe through your mouth)….. has anyone had you try nasal pillows? they’re much less prone to cause feelings of claustraphobia – i’m sure someone on this list has suggested that already, if not, you definately need to look into this, there’s less in contact wtih your face, could make a huge difference. > Considering the ultra-low pressure they started me at (a 3 or 5, as I > recall), The technician said later that patients who have such an > immediate and extreme reaction, especially at such low pressures, are > usually not good candidates for CPAP.
like i said earlier, if you were already feelign anxious, and slightly out of breath, this pressure would have felt much too low for you to breathe comfortably (judging by my own experience) – I deal with CPAP just fine once the pressure is higher (or my "out of breathness" has settled down) ….so your tech doesn’t know as much as they think they do > These techniques make a lot of sense and certainly sound indicated > for someone like me. I asked to try these but they refused (the doctor > and the insurance company) on the grounds that Bipap only helps when the > pressure is so high that they can make a meaningful difference between > inhaling and exhaling. They said that no Bipap machine could > distinguish between the low pressure I was on. I would have needed > something like 3/0, they said there was no such thing and even if there > was it woudln’t make a hill of beans of difference. Ditto for autopap > and ramping…the changes would be so small that it wouldn’t make enough > difference. I was told that these techniques are for patients whos > pressures are very high, not very low. And that was another issue…if > I couldn’t stand a 3, how would I be able to do 10?
As i’ve said twice already (can’ you tell i’m trying to emphasise this point?) too low a pressure may make you feel worse, NOT better….(for other ppl reading…..i mean in reference to feeling comfortable breathing, not acutal CPAP treatment) > And as time goes > on, they said the pressures normally would have to be increased. In > other words, as treatment progressed the pressures couldn’t be expected > to DEcrease, which is what I definitely would want and need. The > prospect of having to face increasing pressure (with its associated > discomfort) is just not a workable prospect in my mind.
It’s not terribly uncommon for people to have their pressure DE-creased….particularly if they loose weight > The ramping idea sounds like a move in the right direction but again > they turned me down. They said that ramping only helps if you can get > to sleep first, and it even then it won’t help if the patient > immediately wakes up (which is what would happen to me, even if I could > get to sleep). I suggested they knock me out cold first with some sort > of super-powerful sleeping pill or anesthetic. They refused this saying > it wouldn’t be safe and drugging an apnea patient’s body into submission > would makes things worse. (I have a world-class tolerance to sleeping > drugs so they are probably right, I would need some hyper-powerful stuff > to force me into a state where CPAP would be passable for me.).
This is what we’ve been trying to tell you in relation to you wanting to use pills to treat your daytime sleepiness…. pills will only make things much worse, espeically while you’re sleeping, anything that relaxes your muscles more, will make the apnea worse…. and anythign that will prevent you from waking up when you need to breathe….will kill you. > The bottom line is that I think I could again try it if three things > were different: 1) if we used some sort of auto/bipap/ramping feature, > 2) we could come up with some tolerable mask arranagement, and 3) some > ultra-powerful sleep-forcing medication could be used (at least > initially). But I couldn’t get cooperation from the providers in > support of any of these changes.
1. I would suggest trying a higher pressure to start with (I guess they didnt’ determine your needed pressure if you couldn’t keep the mask on?) and see if that helps…..but before even gettinig to that stage, get used to haveing something on your face while you go about your daily activities….. 2.. Find out all you can about nasal pillows and see if that will help you feel less claustraphobic…. ppl here will help you out with that if you ask….. i’ve never used nasal pillows so i can’t offer much advice in that area, other than people say it’s great if you’re claustraphobic cause less comes in contact with your face. 3. Follow steps one and two and this won’t be necessary… as stated before, woudl make things worse anyway……may even kill you,….and that sure wouldnt’ be any answer….. > After the difficult first two nights and all the issues surrounding > my experience as well as better understanding of my personality, the > technician and physician and DME company (and insurance company) > concluded that I was one of the patients for whom CPAP just wasn’t going > to work. Even if I could get through the first few days they believed > that I would stop using it. I would have to agree that their concerns > are well-founded.
your tech, doc and DME haven’t been in your situation, probably haven’t had apnea themselves and dont’ know what it’s like to live with, giving up isn’t going to help you, they should realise that……sad thing is, most docs don’t know the kind of things the people in this newsgroup know in terms of what can help you become CPAP compliant…. in my personal experience (with areas other than apnea) docs give up way too easily sometimes…… if it looks like it’s going to be hard work for them or they have no immediate answers………"see ya later, nothing we can do" …….. that’s not good enough, you have a serious health problem and it’s up to your medical professionals to help you deal with it in the best possible way, seems to me like htey’re not doing their job. > I have since changed sleep doctors. The new guy seems even less > willing to consider extreme approaches. He seems to be of the view that > CPAP isn’t right for a patient who would need these types of > interventions – he views CPAP was something that the patient either > takes to or they don’t. Unfortunately he doesn’t seem excited or open > to pursuing any other type of therapy or even simply just symptom > relief. He just keeps saying that CPAP is the treatment for apnea, end > of discussion. If I can’t do CPAP then there isn’t anything they can do > for me.
Your suggested method of symptom relief may well kill you, that’s why sleep docs aren’t about to encourage it….. i can’t blame them for that, tho i can understand how you’re feeling, i deal with excessive fatigue and other symptoms and sometimes i’d do just about anything to make them go away. > Do you have any suggestions for changes and if so, how do I get my > doctor to go along with it? Thanks for listening to this long sad story > and your willingness to help.
Everyone here wants to help you… but you need to want to help yourself too, even if that means taking the hard road rather than searching aroudn for an easy one, … read more »
Response:
Hey…i agree…..we all go through throwing off the mask in the middle of hte night to begin with….but it DOES get easier…hey 
"NormC" <no…@socal.rr.com> wrote in message
news:3C15158A.84A76568@socal.rr.com… – Hide quoted text — Show quoted text -> Keith – I am not a sleep doctor or a psychiatrist; however, I am opinionated! But > my opinions are normally based on my own lousy experience(s). > I have been diligently reading all of your posts and the responses. I haven’t > commented until now, because your situation seemed to be complicated beyond mine, > or anyone else that has posted in the last year – actually, beyond belief. > I am claustrobic. When I was younger I worked on (read under) the family car(s). > The safest way to work under a car is when it is setting on all four wheels. > However, when I was under the car, I had to have a certain amount of clearance > between my face and the bottom of the car… or I couldn’t stay under. So I had to > put the car on jackstands, the most dangerous way to work under a car. And we both > know that this was strictly psychological. > I had identical problems with closed MRIs, the only kind there was in 1988. > IMHO you MAY have a general anxiety disorder. Although you haven’t indicated, I am > curious as to whether you have any other anxiety problems. My understanding of > claustrobia is that it involves the eyes. Using CPAP does not involve the eyes. > In addition, your intense determination to not tolerate 1) and 2) below, makes me > wonder if you shouldn’t be working with a psychiatrist, in particular a > psychopharmacologist. This is the kind of doctor that could help you in every way > possible: anxiety, claustrohobia, drugs to keep you awake, help in tolerating 1) > and 2) below, and any other problem(s) that are brain related. > Just as you don’t have to be Jewish to eat bagels, you don’t have to be psychotic, > to make use of a good psychopharmacologist. I know… from experience with both > <grin>. > From another later post from you, I note that you used your CPAP for two nights and > flung it off your face. Geesh, join the club. It took me 2-3 months to sleep > peacefully. It was the most difficult things I’ve ever had to do, and I’ve had 67 > years of experience ‘doing’. > And I didn’t do it myself. I couldn’t have done it without the help of the people > posting to this NG. > "D. Keith Lamb" wrote: > > If the problem a patient has with CPAP is poor mask fitting or claustrophobia, I > > can see how trying different masks and techniques could help. In other words, I > > can see that there are situations in which working through some options could > > help. > > But my problem with CPAP was much more fundamental. I don’t see how trying > > different brands, etc would change anything. My problem is two fold: 1) I cannot > > tolerate the thought or sensations involved in being hooked up to something while > > trying to sleep, especially something touching my face, and 2) I cannot tolerate > > the sensations of positive airflow pressure. Even if there was some sort of way > > to keep the airflow to neutral until I was sleep, there is the problem of having > > something on my face which prevents me from sleeping in the first place. These > > two problems together kinda acted in concert to ensure that approaching either > > problem alone won’t work. > > If there was some way to completely avoid anything on my face or any positive > > pressure, then somehow very slowly introducing these sensations when I was in a > > state of very deep alseep then I suppose there is a possibility it could work for > > me. But as soon as I rolled over and hit the mask/head gear I’d wake up. So > > maybe I’d need some sort of super-powerful sleeping pill which would force me to > > stay sleep? > > I am the type of person who finds that repeating unpleasant experiences makes > > them harder and harder to tolerate, not easier and easier. In order words, I > > have a long history of not being able to ‘get used’ to unpleasant things. It > > explains why I never could tolerate things like alcohol, coffee or cigarettes. > > Keith > > John Buffett wrote: > > > I have to agree with Buddy as my own experience was that I tried CPAP for a > > > month and could not tolerate it. My Doctor took me off it and treated my other > > > sleep disorder (Restless Legs Syndrome). When that was under control he put me > > > back on CPAP and I went to a different supplier to experience a range of > > > equipment and products. At first it did not look like I could tolerate it as > > > the claustrophobic effects were returning. I would literally wake up in the > > > night and rip this thing off my face as I thought that I was about to > > > suffocate. I got a different mask and a slight bump up in the pressure and have > > > over time and with a lot of work and determination learned to tolerate this > > > cumbersome device. It was worth the effort and today I would not think of not > > > using it. > > > I will also add at his time that I lurked on this newsgroup and visited many > > > sites on the net to learn as much as I can about my sleep diorders. > > > This group is a great deal of help. If I did not have input from others I might > > > stiill be struggling along without CPAP. > > > Hang in there: > > > John > > > Buddy Matlosz wrote: > > >> "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message > > >> news:3C12782C.4010201@columbus.rr.com… > > >> > As I have indicated before in this group, I have been unable to access > > >> > any effective treatment for OSA, finding them all intolerable. > > >> > In a week I have a follow up meeting with my sleep doctor to discuss the > > >> > results of my recent sleep study. I intend to discuss shifting our > > >> > efforts from our long-standing-but-futile effort to ‘fix’ the problem to > > >> > one of simply treating the symptoms. The way I figure it, if you can’t > > >> > fix the disease then at least make the symptoms as livable as possible. > > >> Keith, > > >> How long did you try CPAP before you declared it "intolerable"? Very few > > >> people take to it right away – it took me a few days and I think that makes > > >> me one of the lucky ones. > > >> If your aversion is to the mask, there are many alternative masks available, > > >> or sometimes it’s just a matter of fiddling with the straps and adjustments > > >> and/or using a swing arm to make it more comfortable. People have also > > >> suggested wearing the mask while reading or watching TV in a chair for > > >> awhile (even without the machine on) to get used to it gradually before > > >> trying to sleep with it. > > >> If it’s exhaling against pressure you find intolerable, consider biPAP, > > >> autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as > > >> to merit all the effort you can muster. It sounds like you’ve got yourself > > >> completely talked out of trying it again – do yourself and your loved ones a > > >> favor, adopt a more positive at > > >> ti > > >> tude, and keep trying. > > >> Good luck, > > >> Buddy
Response:
It sounds very much to me like you’ve just decided it’s not going to work wihtout putting in the effort…. i don’t think cpap is easy for anyone, and it sure isn’t easy for someone with an anxiety problem….but you’re killing yourself (litterally) by not being persistant and putting in a bit of effort…. you need to get some professional help with this, someone who treats anxiety disorders who can help you find ways to tollerate the treatment, you’re NEVER going to make anything better with pills where apnea is concerned, you’ll just make it much worse…… please….you should listen to the ppl in this group, they’ve all learnt to deal with the problems CPAP brings and have great advice…. we all know what it’s like living with sleep disorders, and the constant fatigue and sleepiness and there’s a lot here who know that once treated, chances are, you’ll feel like you’ve never felt before……it’s WORTH the effort of sorting this out….so please, find someone who can help "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message news:3C14C06A.7070305@columbus.rr.com… If the problem a patient has with CPAP is poor mask fitting or claustrophobia, I can see how trying different masks and techniques could help. In other words, I can see that there are situations in which working through some options could help. But my problem with CPAP was much more fundamental. I don’t see how trying different brands, etc would change anything. My problem is two fold: 1) I cannot tolerate the thought or sensations involved in being hooked up to something while trying to sleep, especially something touching my face, and 2) I cannot tolerate the sensations of positive airflow pressure. Even if there was some sort of way to keep the airflow to neutral until I was sleep, there is the problem of having something on my face which prevents me from sleeping in the first place. These two problems together kinda acted in concert to ensure that approaching either problem alone won’t work. If there was some way to completely avoid anything on my face or any positive pressure, then somehow very slowly introducing these sensations when I was in a state of very deep alseep then I suppose there is a possibility it could work for me. But as soon as I rolled over and hit the mask/head gear I’d wake up. So maybe I’d need some sort of super-powerful sleeping pill which would force me to stay sleep? I am the type of person who finds that repeating unpleasant experiences makes them harder and harder to tolerate, not easier and easier. In order words, I have a long history of not being able to ‘get used’ to unpleasant things. It explains why I never could tolerate things like alcohol, coffee or cigarettes. Keith John Buffett wrote:
I have to agree with Buddy as my own experience was that I tried CPAP for a month and could not tolerate it. My Doctor took me off it and treated my other sleep disorder (Restless Legs Syndrome). When that was under control he put me back on CPAP and I went to a different supplier to experience a range of equipment and products. At first it did not look like I could tolerate it as the claustrophobic effects were returning. I would literally wake up in the night and rip this thing off my face as I thought that I was about to suffocate. I got a different mask and a slight bump up in the pressure and have over time and with a lot of work and determination learned to tolerate this cumbersome device. It was worth the effort and today I would not think of not using it. I will also add at his time that I lurked on this newsgroup and visited many sites on the net to learn as much as I can about my sleep diorders. This group is a great deal of help. If I did not have input from others I might stiill be struggling along without CPAP. Hang in there: John Buddy Matlosz wrote:
"D. Keith Lamb" <kl…@columbus.rr.com> wrote in messagenews:3C12782C.4010201@columbus.rr.com… As I have indicated before in this group, I have been unable to accessany effective treatment for OSA, finding them all intolerable.In a week I have a follow up meeting with my sleep doctor to discuss theresults of my recent sleep study. I intend to discuss shifting ourefforts from our long-standing-but-futile effort to ‘fix’ the problem toone of simply treating the symptoms. The way I figure it, if you can’tfix the disease then at least make the symptoms as livable as possible. Keith,How long did you try CPAP before you declared it "intolerable"? Very fewpeople take to it right away – it took me a few days and I think that makesme one of the lucky ones.If your aversion is to the mask, there are many alternative masks available,or sometimes it’s just a matter of fiddling with the straps and adjustmentsand/or using a swing arm to make it more comfortable. People have alsosuggested wearing the mask while reading or watching TV in a chair forawhile (even without the machine on) to get used to it gradually beforetrying to sleep with it.If it’s exhaling against pressure you find intolerable, consider biPAP,autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous asto merit all the effort you can muster. It sounds like you’ve got yourselfcompletely talked out of trying it again – do yourself and your loved ones afavor, adopt a more positive at titude, and keep trying.Good luck,Buddy
Response:
Keith – I am not a sleep doctor or a psychiatrist; however, I am opinionated! But my opinions are normally based on my own lousy experience(s). I have been diligently reading all of your posts and the responses. I haven’t commented until now, because your situation seemed to be complicated beyond mine, or anyone else that has posted in the last year – actually, beyond belief. I am claustrobic. When I was younger I worked on (read under) the family car(s). The safest way to work under a car is when it is setting on all four wheels. However, when I was under the car, I had to have a certain amount of clearance between my face and the bottom of the car… or I couldn’t stay under. So I had to put the car on jackstands, the most dangerous way to work under a car. And we both know that this was strictly psychological. I had identical problems with closed MRIs, the only kind there was in 1988. IMHO you MAY have a general anxiety disorder. Although you haven’t indicated, I am curious as to whether you have any other anxiety problems. My understanding of claustrobia is that it involves the eyes. Using CPAP does not involve the eyes. In addition, your intense determination to not tolerate 1) and 2) below, makes me wonder if you shouldn’t be working with a psychiatrist, in particular a psychopharmacologist. This is the kind of doctor that could help you in every way possible: anxiety, claustrohobia, drugs to keep you awake, help in tolerating 1) and 2) below, and any other problem(s) that are brain related. Just as you don’t have to be Jewish to eat bagels, you don’t have to be psychotic, to make use of a good psychopharmacologist. I know… from experience with both <grin>. From another later post from you, I note that you used your CPAP for two nights and flung it off your face. Geesh, join the club. It took me 2-3 months to sleep peacefully. It was the most difficult things I’ve ever had to do, and I’ve had 67 years of experience ‘doing’. And I didn’t do it myself. I couldn’t have done it without the help of the people posting to this NG. – Hide quoted text — Show quoted text -"D. Keith Lamb" wrote: > If the problem a patient has with CPAP is poor mask fitting or claustrophobia, I > can see how trying different masks and techniques could help. In other words, I > can see that there are situations in which working through some options could > help. > But my problem with CPAP was much more fundamental. I don’t see how trying > different brands, etc would change anything. My problem is two fold: 1) I cannot > tolerate the thought or sensations involved in being hooked up to something while > trying to sleep, especially something touching my face, and 2) I cannot tolerate > the sensations of positive airflow pressure. Even if there was some sort of way > to keep the airflow to neutral until I was sleep, there is the problem of having > something on my face which prevents me from sleeping in the first place. These > two problems together kinda acted in concert to ensure that approaching either > problem alone won’t work. > If there was some way to completely avoid anything on my face or any positive > pressure, then somehow very slowly introducing these sensations when I was in a > state of very deep alseep then I suppose there is a possibility it could work for > me. But as soon as I rolled over and hit the mask/head gear I’d wake up. So > maybe I’d need some sort of super-powerful sleeping pill which would force me to > stay sleep? > I am the type of person who finds that repeating unpleasant experiences makes > them harder and harder to tolerate, not easier and easier. In order words, I > have a long history of not being able to ‘get used’ to unpleasant things. It > explains why I never could tolerate things like alcohol, coffee or cigarettes. > Keith > John Buffett wrote: > > I have to agree with Buddy as my own experience was that I tried CPAP for a > > month and could not tolerate it. My Doctor took me off it and treated my other > > sleep disorder (Restless Legs Syndrome). When that was under control he put me > > back on CPAP and I went to a different supplier to experience a range of > > equipment and products. At first it did not look like I could tolerate it as > > the claustrophobic effects were returning. I would literally wake up in the > > night and rip this thing off my face as I thought that I was about to > > suffocate. I got a different mask and a slight bump up in the pressure and have > > over time and with a lot of work and determination learned to tolerate this > > cumbersome device. It was worth the effort and today I would not think of not > > using it. > > I will also add at his time that I lurked on this newsgroup and visited many > > sites on the net to learn as much as I can about my sleep diorders. > > This group is a great deal of help. If I did not have input from others I might > > stiill be struggling along without CPAP. > > Hang in there: > > John > > Buddy Matlosz wrote: > >> "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message > >> news:3C12782C.4010201@columbus.rr.com… > >> > As I have indicated before in this group, I have been unable to access > >> > any effective treatment for OSA, finding them all intolerable. > >> > In a week I have a follow up meeting with my sleep doctor to discuss the > >> > results of my recent sleep study. I intend to discuss shifting our > >> > efforts from our long-standing-but-futile effort to ‘fix’ the problem to > >> > one of simply treating the symptoms. The way I figure it, if you can’t > >> > fix the disease then at least make the symptoms as livable as possible. > >> Keith, > >> How long did you try CPAP before you declared it "intolerable"? Very few > >> people take to it right away – it took me a few days and I think that makes > >> me one of the lucky ones. > >> If your aversion is to the mask, there are many alternative masks available, > >> or sometimes it’s just a matter of fiddling with the straps and adjustments > >> and/or using a swing arm to make it more comfortable. People have also > >> suggested wearing the mask while reading or watching TV in a chair for > >> awhile (even without the machine on) to get used to it gradually before > >> trying to sleep with it. > >> If it’s exhaling against pressure you find intolerable, consider biPAP, > >> autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as > >> to merit all the effort you can muster. It sounds like you’ve got yourself > >> completely talked out of trying it again – do yourself and your loved ones a > >> favor, adopt a more positive at > >> ti > >> tude, and keep trying. > >> Good luck, > >> Buddy
Response:
>Keith, >How long did you try CPAP before you declared it "intolerable"? Very few >people take to it right away – it took me a few days and I think that makes >me one of the lucky ones.
I used it for two nights in a row. I didn’t sleep even one minute during that entire time…it was a continous ‘battle in the bedroom’. But the sleep deprivation wasn’t the reason I stopped it. It was because I couldn’t get over the unpleasant sensations of something attached to my face and the sensations of positive airway pressure. They started me on the lowest pressure the machine could deliver (planning to increase it in a few days), and the fact that the mask they used was the least encumbering one they offered, the technician agreed that if I was having such huge problems after two days with these problems that it wasn’t going to get any easier. I felt I was so incredibly far from being able to tolerable it that it wasn’t worth more sleepless nights and especially more retnal money ($$$!) to keep fighting with it unless they could come up with some significant changes in the setup. It was very clear than must forcing myself to keep battling with it as it was would be futile. >If your aversion is to the mask, there are many alternative masks available, >or sometimes it’s just a matter of fiddling with the straps and adjustments >and/or using a swing arm to make it more comfortable. People have also >suggested wearing the mask while reading or watching TV in a chair for >awhile (even without the machine on) to get used to it gradually before >trying to sleep with it.
They started me using it while sitting on a chair at the kitchen table. I just sat there and gagged and gagged. It was really awful so they recommended I lie down. The gagging and positive pressure discomfort really surprized me…I was not expecting that. I thought it was going to be hard to get used to something hanging on my face, but it was the airflow sensations which really about knocked me over. Considering the ultra-low pressure they started me at (a 3 or 5, as I recall), The technician said later that patients who have such an immediate and extreme reaction, especially at such low pressures, are usually not good candidates for CPAP. >If it’s exhaling against pressure you find intolerable, consider biPAP, autoPAP, or ramping.
These techniques make a lot of sense and certainly sound indicated for someone like me. I asked to try these but they refused (the doctor and the insurance company) on the grounds that Bipap only helps when the pressure is so high that they can make a meaningful difference between inhaling and exhaling. They said that no Bipap machine could distinguish between the low pressure I was on. I would have needed something like 3/0, they said there was no such thing and even if there was it woudln’t make a hill of beans of difference. Ditto for autopap and ramping…the changes would be so small that it wouldn’t make enough difference. I was told that these techniques are for patients whos pressures are very high, not very low. And that was another issue…if I couldn’t stand a 3, how would I be able to do 10? And as time goes on, they said the pressures normally would have to be increased. In other words, as treatment progressed the pressures couldn’t be expected to DEcrease, which is what I definitely would want and need. The prospect of having to face increasing pressure (with its associated discomfort) is just not a workable prospect in my mind. The ramping idea sounds like a move in the right direction but again they turned me down. They said that ramping only helps if you can get to sleep first, and it even then it won’t help if the patient immediately wakes up (which is what would happen to me, even if I could get to sleep). I suggested they knock me out cold first with some sort of super-powerful sleeping pill or anesthetic. They refused this saying it wouldn’t be safe and drugging an apnea patient’s body into submission would makes things worse. (I have a world-class tolerance to sleeping drugs so they are probably right, I would need some hyper-powerful stuff to force me into a state where CPAP would be passable for me.). The bottom line is that I think I could again try it if three things were different: 1) if we used some sort of auto/bipap/ramping feature, 2) we could come up with some tolerable mask arranagement, and 3) some ultra-powerful sleep-forcing medication could be used (at least initially). But I couldn’t get cooperation from the providers in support of any of these changes. After the difficult first two nights and all the issues surrounding my experience as well as better understanding of my personality, the technician and physician and DME company (and insurance company) concluded that I was one of the patients for whom CPAP just wasn’t going to work. Even if I could get through the first few days they believed that I would stop using it. I would have to agree that their concerns are well-founded. I have since changed sleep doctors. The new guy seems even less willing to consider extreme approaches. He seems to be of the view that CPAP isn’t right for a patient who would need these types of interventions – he views CPAP was something that the patient either takes to or they don’t. Unfortunately he doesn’t seem excited or open to pursuing any other type of therapy or even simply just symptom relief. He just keeps saying that CPAP is the treatment for apnea, end of discussion. If I can’t do CPAP then there isn’t anything they can do for me. Do you have any suggestions for changes and if so, how do I get my doctor to go along with it? Thanks for listening to this long sad story and your willingness to help. Keith
Response:
If the problem a patient has with CPAP is poor mask fitting or claustrophobia, I can see how trying different masks and techniques could help. In other words, I can see that there are situations in which working through some options could help. But my problem with CPAP was much more fundamental. I don’t see how trying different brands, etc would change anything. My problem is two fold: 1) I cannot tolerate the thought or sensations involved in being hooked up to something while trying to sleep, especially something touching my face, and 2) I cannot tolerate the sensations of positive airflow pressure. Even if there was some sort of way to keep the airflow to neutral until I was sleep, there is the problem of having something on my face which prevents me from sleeping in the first place. These two problems together kinda acted in concert to ensure that approaching either problem alone won’t work. If there was some way to completely avoid anything on my face or any positive pressure, then somehow very slowly introducing these sensations when I was in a state of very deep alseep then I suppose there is a possibility it could work for me. But as soon as I rolled over and hit the mask/head gear I’d wake up. So maybe I’d need some sort of super-powerful sleeping pill which would force me to stay sleep? I am the type of person who finds that repeating unpleasant experiences makes them harder and harder to tolerate, not easier and easier. In order words, I have a long history of not being able to ‘get used’ to unpleasant things. It explains why I never could tolerate things like alcohol, coffee or cigarettes. Keith – Hide quoted text — Show quoted text -John Buffett wrote: > I have to agree with Buddy as my own experience was that I tried CPAP > for a month and could not tolerate it. My Doctor took me off it and > treated my other sleep disorder (Restless Legs Syndrome). When that > was under control he put me back on CPAP and I went to a different > supplier to experience a range of equipment and products. At first it > did not look like I could tolerate it as the claustrophobic effects > were returning. I would literally wake up in the night and rip this > thing off my face as I thought that I was about to suffocate. I got a > different mask and a slight bump up in the pressure and have over time > and with a lot of work and determination learned to tolerate this > cumbersome device. It was worth the effort and today I would not think > of not using it. > I will also add at his time that I lurked on this newsgroup and > visited many sites on the net to learn as much as I can about my sleep > diorders. > This group is a great deal of help. If I did not have input from > others I might stiill be struggling along without CPAP. > Hang in there: > John > Buddy Matlosz wrote: >>"D. Keith Lamb" <kl…@columbus.rr.com> <mailto:kl…@columbus.rr.com> wrote in message >>news:3C12782C.4010201@columbus.rr.com… >>>As I have indicated before in this group, I have been unable to access >>>any effective treatment for OSA, finding them all intolerable. >>>In a week I have a follow up meeting with my sleep doctor to discuss the >>>results of my recent sleep study. I intend to discuss shifting our >>>efforts from our long-standing-but-futile effort to ‘fix’ the problem to >>>one of simply treating the symptoms. The way I figure it, if you can’t >>>fix the disease then at least make the symptoms as livable as possible. >>Keith, >>How long did you try CPAP before you declared it "intolerable"? Very few >>people take to it right away – it took me a few days and I think that makes >>me one of the lucky ones. >>If your aversion is to the mask, there are many alternative masks available, >>or sometimes it’s just a matter of fiddling with the straps and adjustments >>and/or using a swing arm to make it more comfortable. People have also >>suggested wearing the mask while reading or watching TV in a chair for >>awhile (even without the machine on) to get used to it gradually before >>trying to sleep with it. >>If it’s exhaling against pressure you find intolerable, consider biPAP, >>autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as >>to merit all the effort you can muster. It sounds like you’ve got yourself >>completely talked out of trying it again – do yourself and your loved ones a >>favor, adopt a more positive atti >>tude, and keep trying. >>Good luck, >>Buddy
Response:
Keith: I have to agree with Buddy as my own experience was that I tried CPAP for a month and could not tolerate it. My Doctor took me off it and treated my other sleep disorder (Restless Legs Syndrome). When that was under control he put me back on CPAP and I went to a different supplier to experience a range of equipment and products. At first it did not look like I could tolerate it as the claustrophobic effects were returning. I would literally wake up in the night and rip this thing off my face as I thought that I was about to suffocate. I got a different mask and a slight bump up in the pressure and have over time and with a lot of work and determination learned to tolerate this cumbersome device. It was worth the effort and today I would not think of not using it. I will also add at his time that I lurked on this newsgroup and visited many sites on the net to learn as much as I can about my sleep diorders. This group is a great deal of help. If I did not have input from others I might stiill be struggling along without CPAP. Hang in there: John – Hide quoted text — Show quoted text -Buddy Matlosz wrote: >"D. Keith Lamb" <kl…@columbus.rr.com> wrote in message >news:3C12782C.4010201@columbus.rr.com… >>As I have indicated before in this group, I have been unable to access >>any effective treatment for OSA, finding them all intolerable. >>In a week I have a follow up meeting with my sleep doctor to discuss the >>results of my recent sleep study. I intend to discuss shifting our >>efforts from our long-standing-but-futile effort to ‘fix’ the problem to >>one of simply treating the symptoms. The way I figure it, if you can’t >>fix the disease then at least make the symptoms as livable as possible. >Keith, >How long did you try CPAP before you declared it "intolerable"? Very few >people take to it right away – it took me a few days and I think that makes >me one of the lucky ones. >If your aversion is to the mask, there are many alternative masks available, >or sometimes it’s just a matter of fiddling with the straps and adjustments >and/or using a swing arm to make it more comfortable. People have also >suggested wearing the mask while reading or watching TV in a chair for >awhile (even without the machine on) to get used to it gradually before >trying to sleep with it. >If it’s exhaling against pressure you find intolerable, consider biPAP, >autoPAP, or ramping. In any case, the benefits of xPAP are so tremendous as >to merit all the effort you can muster. It sounds like you’ve got yourself >completely talked out of trying it again – do yourself and your loved ones a >favor, adopt a more positive attitude, and keep trying. >Good luck, >Buddy
Response:
As I have indicated before in this group, I have been unable to access any effective treatment for OSA, finding them all intolerable. In a week I have a follow up meeting with my sleep doctor to discuss the results of my recent sleep study. I intend to discuss shifting our efforts from our long-standing-but-futile effort to ‘fix’ the problem to one of simply treating the symptoms. The way I figure it, if you can’t fix the disease then at least make the symptoms as livable as possible. For most of the symptoms I have decent suggestions as to what to do. But when it comes to daytime sleepiness, especially during driving and other hazardous activities where my life and that of others might be at risk if I doze off, I wanted to hear suggestions from the group as to what medicinal therapies have been tried – what works and what doesn’t? My wife is terrified everytime I commute or go on a long busniess drive early in the mornings…with good reason. I should mention that caffeine has no discernable effect on me. I don’t drink coffee or tea but I drink a fair amount of soda. I’ve also tried a bunch of the OTC caffeine pills but they didn’t seem to do anything, no matter how many I took. I have zero experience with prescription stimulants but I’m nearly immune to other psychoactive drugs like anesthetics, pain killers, anti-depressants and sedatives, so it might be a good assumption that whatever I use needs to be very strong. What stimulants or other types of medications can help with sleepiness and can be taken on an as-needed basis? Are they generally easy to get prescriptions for? Is a sleep doctor the best type of doctor to pursue this with, or is some other specialists better situated to help (such as a psychiatrist perhaps?). Thanks in advance for any suggestions which I can use on my upcoming sleep doctor appointment. Keith Columbus, OH
Response:
On Sat, 08 Dec 2001 20:28:02 GMT, "D. Keith Lamb" <kl…@columbus.rr.com> wrote: >What stimulants or other types of medications can help with sleepiness >and can be taken on an as-needed basis?
I’ve had Ritalin for EDS (need for that was immediately ended by CPAP). >Are they generally easy to get prescriptions for?
Most of the stimulants are C-II; they’re definitely abusable. There’s a number of hoops to jump through on C-II drugs (both Federal and in many states), but none of them are that onerous. (Written prescription only, no refills, and special forms come to mind.) >Is a sleep doctor the best type of doctor to pursue this with, or is some >other specialists better situated to help (such as a psychiatrist perhaps?).
Psychiatrists occasionally use Ritalin to goose up the effects of antidepressants. Antidepressants can also be stimulating, but they generally take a considerable amount of time to take effect and/or wear off.
Response:
"D. Keith Lamb" wrote: > no matter how many I took. I have zero experience with prescription > stimulants but I’m nearly immune to other psychoactive drugs like > anesthetics, pain killers, anti-depressants and sedatives, so it might > be a good assumption that whatever I use needs to be very strong.
Keith, that is what one would logically think, however there are people for whom a normal dose or even an increased dose will do nothing, but give them a very low ( to low for normal) dose and it works like a charm. Most doc’s don’t know about this but is well known in a certain area of the medical world ( dealing with a certain disorder, but the phenomena is not contained to those with the disorder). Also, the alternative field recognizes so called "contraries". Try it out one day when it is safe. Take a sedative and see if it makes you less sleepy ( albeit so far near impossible to convince a doc of that). If that seems to fit you, your best bet might be homeopathic medicine. Paula
Response:
Stimulants are only short term something has to be done about the sleep apnea. Eventually stimulants will kill because most increase heart rate and the old heart will just wear out. "D. Keith Lamb" <kl…@columbus.rr.com> wrote in message news:3C12782C.4010201@columbus.rr.com… – Hide quoted text — Show quoted text -> As I have indicated before in this group, I have been unable to access > any effective treatment for OSA, finding them all intolerable. > In a week I have a follow up meeting with my sleep doctor to discuss the > results of my recent sleep study. I intend to discuss shifting our > efforts from our long-standing-but-futile effort to ‘fix’ the problem to > one of simply treating the symptoms. The way I figure it, if you can’t > fix the disease then at least make the symptoms as livable as possible. > For most of the symptoms I have decent suggestions as to what to do. > But when it comes to daytime sleepiness, especially during driving and > other hazardous activities where my life and that of others might be at > risk if I doze off, I wanted to hear suggestions from the group as to > what medicinal therapies have been tried – what works and what doesn’t? > My wife is terrified everytime I commute or go on a long busniess drive > early in the mornings…with good reason. > I should mention that caffeine has no discernable effect on me. I don’t > drink coffee or tea but I drink a fair amount of soda. I’ve also tried > a bunch of the OTC caffeine pills but they didn’t seem to do anything, > no matter how many I took. I have zero experience with prescription > stimulants but I’m nearly immune to other psychoactive drugs like > anesthetics, pain killers, anti-depressants and sedatives, so it might > be a good assumption that whatever I use needs to be very strong. > What stimulants or other types of medications can help with sleepiness > and can be taken on an as-needed basis? Are they generally easy to get > prescriptions for? Is a sleep doctor the best type of doctor to pursue > this with, or is some other specialists better situated to help (such as > a psychiatrist perhaps?). > Thanks in advance for any suggestions which I can use on my upcoming > sleep doctor appointment. > Keith > Columbus, OH
Response:
) Philip – Hide quoted text — Show quoted text – 
– Hide quoted text — Show quoted text – I am apologize to those of you living in south Florida that I awoke this morning around 6:00AM. It was a very bad leg cramp that lasted for around four minutes. I did put my face into the pillow to try and muffle my reaction but I know some of you must have heard the commotion. I remember seeing some vitamins for leg cramps in a drugstore. I am taking a large multi-pack vitamin that has around seven pills in a plastic envelope and is supposed to have everything needed but after limping to the refrigerator and reading the box I saw I was only getting fifty percent of the daily allowance of calcium. So I will go to the drugstore and make sure I am getting all that nutrients I need so that you can I can get a full nights sleep. 