Can people genuinely fail to tolerate CPAP?

[davep700]

Do you all think the person writing below is "wired" such that he/she is truly incompatible with CPAP or may have there been some helpful tweaks that were not attempted?

I have "persevered", "given it more time", "been patient with myself and the cpap", talked to the doctor four times, practice impeccable sleep hygeine, tried CBT, self-hypnosis, "toughed it out" with the mask on all night regardless of insomnia and inadequate REM for 14 consecutive days (at the end of which I was so sleep deprived I was hallucinating voices and was unfit to operate a car or cook on a gas stove), been through seven different masks, moved out of my spouse's bedroom, bought a white noise generator, chamomile tea, melatonin, yoga, warm baths, and relentless "one more tries" for ELEVEN MONTHS since my apnea diagnosis and still suffer from cpap induced insomnia/inadequate sleep. I have more arousals per hour with the mask on due not to apnea but simple re-awakening of my brain than I did with having untreated sleep apnea. I once forced myself to stay awake for 48 hours so that I would simply pass out with the cpap mask on and it did not work.

The truth is, some people can't tolerate cpap and those who are suffering this way need to be understood and given helpful information, not just lovingly encouraged to try a bit harder. I have lived for nearly a year in the unrelenting hell of having even my poor quality apneic sleep being taken from me, then being brushed off by the medical community as someone who just needs to "keep trying". I am now looking into a dental device to see if it provides any relief from the apnea. I was never told this was even an option by anyone at the sleep specialist's or at the DME-everyone just seemed happy to take my money for mask after mask and follow up doctor visits where I was patted on the hand and told to stick with it, dismissed as whiny and biled a fortune for my trouble. Just because it works for many does not mean that the few for whom it doesn't work are doing anything wrong, and there should be more study done to find better solutions for people who can't sleep with a cpap on.

If you are like me, and suffer from intense cpap insomnia, DO try all the tips listed above. If they aren't working, as they have not worked for me, continue to advocate for yourself with your doctor--as many times as it takes to get yourself heard. I had to switch medical providers to even be told that there's a viable dental option I can try. Do not let them simply continue to brush you off with a cheery, "keep trying you'll get the hang of it!"

I would even like to exhort those who have managed to jump through the hoops of misery and manage to get by with their cpap treatment to keep giving the necessary demanding feedback to spur manufacturers into coming up with better products. It shouldn't be so uncomfortable for anyone to get used to cpap, I really belive the medical community can do better by us. Sleep apnea kills, and the treatment ought not to be torture.

Source: http://adventures-in-hosehead-land.blog ... er_19.html

[BlackSpinner]

They didn't try therapy, CBT. It is proven to help with insomnia.
Most of the issues are "in his/her head". If you don't deal with it you will fail.

[IDontSnoreISwear]

Who knows. At first blush it sounds like that blog was written by someone who is convinced that they will never be able to use CPAP, so it's become a self-fulfilling prophecy. Whether that person's belief is due to other undiagnosed physical, neurological, or psychiatric issues, or what have you, it's hard to tell. Someone posted here recently talking about being so claustrophobic that she "screamed for two hours" during her sleep study. People are weird, man. Also they rarely give you the whole story.

[Bons]

If someone with strong resistance or anxiety meets doctor that isn't very helpful, it's probably a situation that's doomed to failure.

Some of us, like my husband, take to CPAP like a duck to water. He breathes well and feels well with it since night #1, has never looked at his data, and sees no reason to. I needed a lot of adjustments and hand-holding as I went quickly from CPAP to BiPap to ASV, and still needed to just suffer through weeks until the machine and I learned to dance with each other. It would've been really easy to give up and quit.

[robysue]

Do you all think the person writing below is "wired" such that he/she is truly incompatible with CPAP or may have there been some helpful tweaks that were not attempted?

I have "persevered", "given it more time", "been patient with myself and the cpap", talked to the doctor four times, practice impeccable sleep hygeine, tried CBT, self-hypnosis, "toughed it out" with the mask on all night regardless of insomnia and inadequate REM for 14 consecutive days (at the end of which I was so sleep deprived I was hallucinating voices and was unfit to operate a car or cook on a gas stove), been through seven different masks, moved out of my spouse's bedroom, bought a white noise generator, chamomile tea, melatonin, yoga, warm baths, and relentless "one more tries" for ELEVEN MONTHS since my apnea diagnosis and still suffer from cpap induced insomnia/inadequate sleep. I have more arousals per hour with the mask on due not to apnea but simple re-awakening of my brain than I did with having untreated sleep apnea. I once forced myself to stay awake for 48 hours so that I would simply pass out with the cpap mask on and it did not work.

The truth is, some people can't tolerate cpap and those who are suffering this way need to be understood and given helpful information, not just lovingly encouraged to try a bit harder. I have lived for nearly a year in the unrelenting hell of having even my poor quality apneic sleep being taken from me, then being brushed off by the medical community as someone who just needs to "keep trying". I am now looking into a dental device to see if it provides any relief from the apnea. I was never told this was even an option by anyone at the sleep specialist's or at the DME-everyone just seemed happy to take my money for mask after mask and follow up doctor visits where I was patted on the hand and told to stick with it, dismissed as whiny and biled a fortune for my trouble. Just because it works for many does not mean that the few for whom it doesn't work are doing anything wrong, and there should be more study done to find better solutions for people who can't sleep with a cpap on.

If you are like me, and suffer from intense cpap insomnia, DO try all the tips listed above. If they aren't working, as they have not worked for me, continue to advocate for yourself with your doctor--as many times as it takes to get yourself heard. I had to switch medical providers to even be told that there's a viable dental option I can try. Do not let them simply continue to brush you off with a cheery, "keep trying you'll get the hang of it!"

I would even like to exhort those who have managed to jump through the hoops of misery and manage to get by with their cpap treatment to keep giving the necessary demanding feedback to spur manufacturers into coming up with better products. It shouldn't be so uncomfortable for anyone to get used to cpap, I really belive the medical community can do better by us. Sleep apnea kills, and the treatment ought not to be torture.

Source: http://adventures-in-hosehead-land.blog ... er_19.html

As the author of Taming the CPAP Induced Insomnia Monster essay posted to the blog at http://adventures-in-hosehead-land.blog ... er_19.html, I want to make it VERY CLEAR: The above block quote is from someone commenting on my blog's essay. This quote is NOT part of my essay and I want to make this really, really clear to the folks here.

The whole point of my essay is: If you want to make CPAP work, but you are experiencing severe issues with CPAP-induced insomnia, there are ways to bring the insomnia under control and become a fully compliant PAPer who benefits from therapy.

They didn't try therapy, CBT. It is proven to help with insomnia.
Most of the issues are "in his/her head". If you don't deal with it you will fail.

I believe that BlackSpinner is correct: The person who made the comment quoted above on my blog most likely did NOT try CBT therapy. Or they didn't really work at doing the CBT---to really "try" CBT-I means you have to be willing to do some work in changing your behavior. Or they only gave the CBT a couple of weeks, but it can take several months before CBT-I really makes a lasting improvement in the insomnia.

[davep700]

The person who made the comment quoted above on my blog most likely did NOT try CBT therapy. Or they didn't really work at doing the CBT---to really "try" CBT-I means you have to be willing to do some work in changing your behavior. Or they only gave the CBT a couple of weeks, but it can take several months before CBT-I really makes a lasting improvement in the insomnia.

Thanks for finding this thread. You make a good point that we don't how far the person got in pursuing CBT for insomnia.

[Julie]

Black Spinner - they DID try CBT - read it again.

[BlackSpinner]

Black Spinner - they DID try CBT - read it again.

Trying is never good enough.

[chunkyfrog]

"Trying" may have many definitions; how many times, how long, how many different variations, etc.
Too many never have their heart in it; and are just going through the motions,
No, that is NOT "trying". It is more like marking time until they can be excused.
Cpap was not really a "piece of cake" for me; but I am just bullheaded enough to ignore the small stuff,
and keep my eye on the brass ring.
So many here have surmounted much larger obstacles to succeed; these are the heroes of cpap.

[Gasper62]

What was that children's book..... I think I can't, I think I can't, I think I can't. Failure can hardly be a surprise, if one has planted that notion in their head. LONG before I'd tolerate such sleep deprivation, I'd definitely acquire the meds necessary to knock myself out long enough to get some PAP sleep. I used a mini-dose of Ambien at the beginning of my therapy. (and still do on rare occasions) Whatever works.

[Janknitz]

Due to a genetic disorder, I have some pretty serious sensory issues. I've spent my life working hard to overcome them to do the things I need to do in my life. The fact that I'm (mostly) successful does not mean that I can't recognize that not everyone will have the same success. Sometimes I fail miserably, myself. It has taken me a good long time to learn that it's not a character flaw--sometimes the hard wiring just doesn't permit me no matter how hard I try. And nobody here knows one little bit of how hard I had to work to be able to sleep with all that stuff strapped to my face blowing air all night.

All I can say is until you have walked in another's shoes you don't know &^%$# about them. You don't know what it's like in their body, with their sensitivities, with their environment and stresses and pressures. You can't know how much effort they really put in or not.

We have no business judging someone like this. All we can offer as fellow CPAP users is suggestions about what worked for US. What worked for each of us may not work for them. And all this caterwauling probably makes that original poster feel like shit, because--admit it--you have judged that person unworthy for not sucking it up and getting on with it.

We see people here every day who have rotten attitudes. They don't want to work hard to make this work for them. They often want us to support their ignorance and give them permission to flake off. Some just want to whine. But that poster is NOT one of those people. This is someone trying really hard, who just is not finding success. Who are we to criticize because our pet method wasn't tried, or wasn't tried hard enough or often enough???

The original poster does NOT deserve all the stuff you are flinging at her. So just STOP! STOP right now!!!!

[davep700]

There was a good oberservation made, it doesn't seem that this person tried medication.

[49er]

Due to a genetic disorder, I have some pretty serious sensory issues. I've spent my life working hard to overcome them to do the things I need to do in my life. The fact that I'm (mostly) successful does not mean that I can't recognize that not everyone will have the same success. Sometimes I fail miserably, myself. It has taken me a good long time to learn that it's not a character flaw--sometimes the hard wiring just doesn't permit me no matter how hard I try. And nobody here knows one little bit of how hard I had to work to be able to sleep with all that stuff strapped to my face blowing air all night.

All I can say is until you have walked in another's shoes you don't know &^%$# about them. You don't know what it's like in their body, with their sensitivities, with their environment and stresses and pressures. You can't know how much effort they really put in or not.

We have no business judging someone like this. All we can offer as fellow CPAP users is suggestions about what worked for US. What worked for each of us may not work for them. And all this caterwauling probably makes that original poster feel like shit, because--admit it--you have judged that person unworthy for not sucking it up and getting on with it.

We see people here every day who have rotten attitudes. They don't want to work hard to make this work for them. They often want us to support their ignorance and give them permission to flake off. Some just want to whine. But that poster is NOT one of those people. This is someone trying really hard, who just is not finding success. Who are we to criticize because our pet method wasn't tried, or wasn't tried hard enough or often enough???

The original poster does NOT deserve all the stuff you are flinging at her. So just STOP! STOP right now!!!!

++++1

[49er]

There was a good oberservation made, it doesn't seem that this person tried medication.

Maybe the person is very sensitive to meds and can't take anything. Or maybe they did try and nothing worked.

49er

[Gasper62]

"The original poster does NOT deserve all the stuff you are flinging at her."


FWIW, the "original poster" apparently made their post on a different board... some seven months ago. I seriously doubt that they're experiencing what's being discussed/flung here.....today.