Can people genuinely fail to tolerate CPAP?

[Goofproof]

People can Fail or Succeed at anything, all they have to do is make up their minds, which they would rather do. Most times they take the easy way out, then cry a bout the results. Jim

[jnk...]

I believe it is useful information to let new ones know that many of us had difficulties adjusting to and dealing with PAP ourselves. It is useful to let new ones know that OFTEN patience, diligence, and experimentation pay off in adjusting. But it is stupid, in my opinion, to imply that every human being is capable of making any medicine or therapy work for them, because biology and common sense prove otherwise.

Medical therapies, much like drugs, tend to be aimed squarely at the center of the bell curve, and I don't think that beating up the outliers helps anyone.

I consider the statements along the lines of "you better stop whining and make it work or you will die" to be just this side of slinging a death threat. It is ugly to my ears and eyes. Every time.

Good doctors understand that being helpful does not involve being abusive and condescending and judgmental. So what gives anyone here the right to be?

What a shame if a tender-hearted new one with severe OSA came here to get help making PAP work and was instead verbally belittled and punched in the gut and subsequently gave up on getting help from anyone and actually did die! Wouldn't it be better if he had, instead. been treated with the basic dignity due any fellow human being and was informed that there are options for those who are unable to tolerate some forms of PAP and that we are here to serve him in support of whatever efforts he is able to muster? Individually, we, at cpaptalk.com, either fail or succeed at THAT, in my opinion.

[lilly747]

davep700 wrote:
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 don't know what the answer is to that question but I do believe that we all have the right to chose "our own poison." I read a post that really sums up the way I feel about the whole thing...giving advice and whether or not one takes it....I don't remember the post it was in... but this is what they said...

"I think we all need to take responsibility for ourselves - whether it be providing suggestions or receiving them - .... My responsibility is weighing it all up with the best information I have and applying it at my own risk, and in this way there is no one to blame for my own treatment than myself - and as has been noted elsewhere, even our doctor's advice needs to be received with healthy scepticism, respecting their experience and training in which I/we place a lot of trust (they do indeed hold a responsibility toward us patients), but it doesn't absolve me/us from being more informed about my/our treatment...'

[Janknitz]

"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.

I remember seeing this post here, too or one very similar. And how do you know that person is not ALSO here???

It doesn't make it right, even if that person is not here.

[chunkyfrog]

I remember that post, good points, spelling, not so much.

[Gasper62]

Here's the last bit of the post on 9/28/15 , it's very telling about the person's mindset at the time, IMO.


"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.

There. I'm sorry that this bit didn't post at first. I'm not trying to criticize the tips here, they are actually the only things a person can do to mitigate the torment of cpap. I only wished to add that there are some of us for whom cpap just fails altogether, and that the industry benefits from the mistaken belief that everyone can accommodate cpap and if you can't it's your problem alone."

[SewTired]

No matter what, some people fail at a therapy. It's not in the cards. The therapy THEY need either hasn't been invented or made available to them. I agree that MANY people who fail simply don't try or don't have the right support. But yeah, there are going to be some that will give it their all and still fail because what they need isn't there.

[Noctuary]

i tolerate it, I feel comfortable with it

but i still awaken exhausted

8, 9, 10 hours- tired

waiting, waiting to be set free;

sleep apnea has taken everything frome me

let it takt the rest i'm done with this

[Noctuary]

No matter what, some people fail at a therapy. It's not in the cards. The therapy THEY need either hasn't been invented or made available to them. I agree that MANY people who fail simply don't try or don't have the right support. But yeah, there are going to be some that will give it their all and still fail because what they need isn't there.

yes let it be so let it hurry i hate this xxxx tired life

[49er]

No matter what, some people fail at a therapy. It's not in the cards. The therapy THEY need either hasn't been invented or made available to them. I agree that MANY people who fail simply don't try or don't have the right support. But yeah, there are going to be some that will give it their all and still fail because what they need isn't there.

Well said, Sew Tired. Contrary to popular belief on this forum and in society, there are folks who do try everything they can to make something work and still fail. Why that is so hard to understand is beyond me.

49er

[Goofproof]

No matter what, some people fail at a therapy. It's not in the cards. The therapy THEY need either hasn't been invented or made available to them. I agree that MANY people who fail simply don't try or don't have the right support. But yeah, there are going to be some that will give it their all and still fail because what they need isn't there.

yes let it be so let it hurry i hate this fukcing tired life

You don't supposed, "It's Not In The Cards", is because many aren't playing with a Full Deck!

To Succeed at anything requires effort, only one person can make anything good happen, You, but it does require effort. Jim

[Judge Nap]

What a shame if a tender-hearted new one with severe OSA came here to get help making PAP work and was instead verbally belittled and punched in the gut and subsequently gave up on getting help from anyone and actually did die!

I imagine that has happened more than once. It's just a matter of how long (years) it took them to die and how much they suffered.

But, for everyone that has happened to, I am willing to bet there are tens of thousands who never found their way here and then met the same fate.

Don't try to gild the lily. The perfect is the enemy of the good.

I don't post here often, but I do have a great appreciation for this forum and the heavy users who are helping so many daily.

[FairwayGirl]

I have been trying everything I can to make my CPAP work. I have read and followed several CBT's, though I have not found an actual therapist. I wouldn't have time to see one if I did find one. I am much worse off since starting CPAP than I ever was before. 3-5 epileptic events per hour when I was having 1-2 a month before!! I am so exahusted that it has just set my epilepsy out the roof!! But, I have tried everything. Nothing is helping. I keep finding my self asking the same question. When do you know CPAP is NOT working? Are there people it simply will not work for? Is there a way to know CPAP will not work for you? All these naggin questions. I wake up much more now every night than I ever did before and I am so much more tired I think people just get very frustrated because the common answer is to just keep trying. When we feel like that's all we've been doing. Trying and trying, yet it's getting us no where.

[Lucyhere]

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!!!!

Another +1

[Janknitz]

I have been trying everything I can to make my CPAP work. I have read and followed several CBT's, though I have not found an actual therapist. I wouldn't have time to see one if I did find one. I am much worse off since starting CPAP than I ever was before. 3-5 epileptic events per hour when I was having 1-2 a month before!! I am so exahusted that it has just set my epilepsy out the roof!! But, I have tried everything. Nothing is helping. I keep finding my self asking the same question. When do you know CPAP is NOT working? Are there people it simply will not work for? Is there a way to know CPAP will not work for you? All these naggin questions. I wake up much more now every night than I ever did before and I am so much more tired I think people just get very frustrated because the common answer is to just keep trying. When we feel like that's all we've been doing. Trying and trying, yet it's getting us no where.

Sometimes one issue cannot resolve until you have others under control. They are all interconnected. Maybe the neurological issues or the meds you are taking have to be more under control. Have you seen this approach? https://www.charliefoundation.org/explo ... g-the-diet