Can people genuinely fail to tolerate CPAP?

[Colonel-Cactus]

dcinma,

I see that you have registered and made one post here at CPAPtalk.com.

My question is this: If you have given up on CPAP completely, then why are you here?

I assume you were doing some kind of web search that brought you to this forum or perhaps this particular thread on this forum. But what were you searching for and why?

Are you looking for "permission" to quit CPAP? I'm sorry, but you won't find that here: This forum is all about compliant CPAP users helping others become compliant CPAP users by helping them figure out how to conquer all the various snags and bumps that new PAPers often experience. There's a lot of hand holding for folks who are having a tough time adjusting to CPAP, but who for whatever reason, have decided that they do NOT want to just give up and put the damn thing in the closet.

But there's not a lot of hand holding for folks who just come in and say, "I hate CPAP." I'm sure that if you keep looking you will find some "I hate CPAP" forums that focus on selling snake oil as a way of treating OSA. They'll be happy to tell you that you did the right thing when you threw the CPAP in the closet and they'll be happy to verify just how horrid the whole CPAP experience is.

More seriously, however, there are also some other sleep apnea forums that are less focused on CPAP support and more open to posts from people who have decided to treat their OSA with oral appliances or surgery. Some people do find some real relief in properly made and fitted oral appliances, but they're not cheap and insurance often does not pay for them---particularly when the patient has severe OSA. But oral appliances are not officially approved to treat severe OSA since "successful oral appliance treatment" usually means a 50% reduction in the AHI. Surgery is usually regarded with a great deal of skepticism even on less CPAP-focused OSA forums; it's invasive and it fails roughly 50% of the time or more, particularly if you look at what happens 5 years after surgery. And it can make CPAP harder to tolerate when the OSA returns.

Are you looking to "vent" about how awful CPAP is? Well, you've now had a chance to vent. So what's next? More venting? If you've already tossed the thing into the closet, why are you still needing to vent about it? You're done with it, so why the residual anger? If you think you sleep just fine without the CPAP, the why are you searching the internet with some combination of terms that leads you to a CPAP support group?

I can't say I sleep well, I do know I feel like I'm choking a lot or short of breath when i wake up. My daughter (I'm a divorced dad with one of my adult children living with me) claims she can hear me snoring outside my room.

Or are you perhaps slowly beginning to realize that as bad as CPAP is, the untreated OSA may be worse in the long run?

But I don't think I can use this infernal machine again...between losing so much sleep due to the irritation of having something on my face, getting tied up in hoses because I sleep on my stomach and having it clearly causing me to get sick....badly...when I use it....I don't know any other options with this. So I think I'd fall in the category of those who genuinely fail to tolerate it and in fact passionately hate the dang thing.

Passionately hating the dang thing is a good way to lead to not being able to tolerate it. I say that as someone who passionately hated my CPAP for the first year of PAPing, and I'm still not wildly in love with it. Did my hatred of the damn thing cause my CPAP-induced insomnia? Probably not. But it did keep the insomnia going on for months and months and months longer than it would have if I had not hated the thing quite so passionately.

For what it's worth, my husband sleeps on his stomach and uses a CPAP every night. As do a lot of other PAPers.

Hanging the hose overhead can solve the problem of getting tangled in the hose at night.

As for the irritation of having something on your face? Well a lot of us share that. And it takes some people months before they find a mask that doesn't bother them too much. And it can take more months to get their brain to accept that the alien is a friendly alien instead of a monster.

As for the CPAP making you sick with bronchitis. I may be over simplifying, but bronchitis type symptoms can be caused by too much humidity or too little humidity. And yes, having wind blown down your airpipe can take some getting used to. But for most people, breathing in clean, filtered air usually helps with upper respiratory illnesses rather than causes them.

This was a very nice post robbysue. I am new here and have only read a handful of posts and hadn't really thought much about "what this board was for"? This "bigger picture" paradigm of this post was really helpful to me. Thank you for taking what must have been A LOT of time - to write this. It was a very good read for me. And thank you to the original poster who you were responding to as well. It took both personalities / charters to make this resonate.

Grace

[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 fukcing tired life

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

Two years of effort so far; still waiting for a payoff.

mostly pissing and moaning.

Justifiably, I would add.

[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 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

Two years of effort so far; still waiting for a payoff.

You don't believe waking up in the morning over 730 days in a row alive is a payoff, I do. A really cheap one. Jim

No, I don't. Waking up is the worst thing to happen, and it happens everyday. One tired, grueling, miserable day after another. Quality of life is important too.

[Julie]

Noctuary - why do you keep posting - all negative stuff? We so get that you're unhappy. If you haven't found help here, do you think you'll magically find it today? It's sad that you haven't been able to get answers that satisfy you, though I do think you have other issues that have nothing to do with OSA or Cpap and that those may be having the effect of keeping you from succeeding. I know one thing, you're not helping us to encourage others that their Cpap problems can be improved, and so I wonder why you keep coming back just to tell us how bad your life is. Everyone's tried to help you for a long time, but if you think you'll become the poster boy for Cpap failure here, you need to think again... no one will tell you you're 'right' and that therefore everyone else should just give up.

[palerider]

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

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

Two years of effort so far; still waiting for a payoff.

mostly pissing and moaning.

justifiably, I would add.

well, it *IS* all you've ever done here... go with what you're good at, I suppose.

[Thomas F.]

I'm living proof cpap doesn't work for everyone. When the root cause of the problem is tongue base too close to airway then it's a structural issue cpap on its own can't fix. The instant rem sleep arrives the tongue falls back into airway cpap reacts with more pressure but it's too late because the brain reacts faster and already bumps you out of rem. The process repeats all night. No rem equals no restorative sleep. Those successful people on cpap should count their blessings that your underlying airway anatomy allows it. Stop with this try harder nonsense. I had a decade of no rem sleep but finally solved it with surgery, a dental appliance, and cervical neck collar. No cpap required, sleep great now and have rem to prove it. PM me if you need more info.

[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.

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

Effort does nothing if the application isn't appropriate. If xpap is not the correct therapy to fix someone's issues, then no matter what they do to make xpap work for them is not going to work. If they have something additional going on that has NOT BEEN IDENTIFIED, then it is not going to work. Cpap works for me only to a point because RLS and other issues wake me up. Therefore, although I am no longer taking 2 naps a day, I still go through most days tired. At least I CAN identify what the issues are - some people's issues remain hidden.

[kteague]

... If they have something additional going on that has NOT BEEN IDENTIFIED, then it is not going to work. Cpap works for me only to a point because RLS and other issues wake me up. Therefore, although I am no longer taking 2 naps a day, I still go through most days tired. At least I CAN identify what the issues are - some people's issues remain hidden.

Not tolerating CPAP is distinctly different in my mind from not feeling better. On the term "work" in regards to CPAP, I think it's helpful to be clear on our definitions of the word. If one is able to use the treatment, their apneas are resolved, their oxygen level stays up, and the treatment itself does not cause arousals or insomnia - it works. When other factors outside the sleep apnea and its treatment are at play, one can still feel bad yet the CPAP therapy may be working perfectly as designed. Now if "work" means "makes me feel better" then it may not work by that definition. Like you, I'm glad to at least know my issues. I remember the days of not knowing and feeling so hopeless to be able to help myself, and later deciding even if I can't fix my legs I can fix my breathing. We see people on here report that they continue with CPAP because they know it is doing what it is supposed to do, in spite of them still feeling awful. That was me the first few years. Thankfully, as my RLS/PLMD improved, so did my tolerance of the mask. Actually failing to tolerate CPAP therapy is a beast on it's own.

[Noctuary]

well, it *IS* all you've ever done here... go with what you're good at, I suppose.

Well, if you define "is" as purchasing another cpap, buying a laptop to use "sleepyhead", posting dozens of "sleepyhead" screenshots, getting blood work done, moving the pressure up; moving the pressure down; EPR on, EPR off, nasal mask, then full-face mask........well yeah, that's all I've done.

Moron.