Can people genuinely fail to tolerate CPAP?

[FairwayGirl]

I have researched that diet, but, you have to keep in mind, my epilepsy was fully controlled before CPAP. Also, my daughter and husband are allergic to wheat, eggs (whites and yolks), milk and yeast! I have been tested and I am not allergic or intolerant to anything at all :/ it is difficult to follow that diet when we have very strict diets to follow already for them :/ but, I have read all about it and, beyond frustrating because my epilepsy issues have only come about since starting CPAP (in the numbers they are now. I had them, but not often!) I have been well controlled for years with epilepsy, and my son has epilepsy and is just starting meds for it.

[CowFish]

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!!

Sorry, I haven't been following your posts, so ignore my question if it doesn't make sense. Have you tried discontinuing CPAP for a few nights to see if your epileptic events return to pre-CPAP levels?

[FairwayGirl]

I was scared to stop it because I was still in the "compliance" time. But, my insurance told me they don't monitor a compliance period to pay for the CPAP (I was told they wouldn't pay if I wasn't compliant!?!) I've been worried the lady I talked to wasn't 100% truthful, or just didn't really know. On the day's that I don't use it (like last night) I don't have many epileptic events...but, I haven't gone several days in a row for fear of backlash from the insurance company :/

[traveling Utz]

I know the feeling of this initial post! My road has not been easy, it's been frustrating.

I was misdiagnosed initially, and only because I had a data card, and used info I found, did I get the proper diagnosis. It wasn't the sleep lab, it was me that went to the DR and had her evaluate my results. She was amazed!

I have never adjusted to any mask, but I haven't quit. I will take a average of 5 hrs a night until the 2 lunestas I take wear off.

I tried CBT, it did nothing..

I am not gonna quit, my Wisp mask and I have a agreement to keep working every night!


Sent from my iPhone using Tapatalk

[dcinma]

I had a terrible time tolerating CPAP myself and have put it in the closet. First supposedly diagnosed in the mid to late 1990s after trying to deal with chronic muscle pain and stiffness, tried it for a while but kept waking up all wrapped up in hoses and with the mask torn off so after a while I simply forgot about it and went on with life. A couple years later the doc convinced me to try another one which I did for a short time and just couldn't sleep with that thing on my face.

Then my PCP convinced me to have an "at home" sleep study in late 2013, which I couldn't complete the first time (apparently I tore the device off my forehead less then 20 minutes after falling asleep); did complete about an hour the second time. AHI was in the "severe" range according to the analysis, so he sent me to a neurologist who's solution was, of course, a CPAP machine. In this case she wanted me to try APAP with a full face mask. I did my best to complete the compliance requirements for insurance and mostly made it although I did end up paying the last month or two of rental out of pocket because I was determined to give it a go rather than just sending it back. I read the data myself (absolutely no follow up from the doctor at all) and found my AHI was less than 4 most of the time using it but 4 hours was a rarity because I couldn't tolerate the mask. Then I kept getting bad bronchitis episodes, would quit using the machine, get better, start using it again and get sick again, etc...so finally I packed it up and put it in the closet.

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. 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.

[chunkyfrog]

I tried twenty (20) masks before I found one I could feel comfortable in.
My first mask moved my teeth, so I was desperate to find one that worked for me.
For a long time, I alternated between masks that hurt me in different places, so I could swap and heal.
My apnea was moderate, but it is possible every one woke me up in a panic.
Compared to that, mask cruelty was a reprieve. I was able to put up with much to be able to sleep normally.

[robysue]

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.

[chunkyfrog]

HATE THE DISEASE; NOT THE TREATMENT.

[Goofproof]

HATE THE DISEASE; NOT THE TREATMENT.

AT LEAST THIS DISEASE HAS FOR MOST A NON-INVASIVE TREATMENT THAT ONLY REQUIRES SOME CLEAN AIR PRESSURE, NOT A TEAM OF KNIFE HAPPY SURGEONS

[Janknitz]

dcinma,

DID you try other masks? Your doctor did you a great disservice by prescribing a FF mask for you, if you haven't been able to try other masks. I think that FF masks are the most difficult to use. They are big, heavy, leaky, and awkward. They cause enormous discomfort and often claustrophobia. Because there's so much surface area that must have contact with your face which is always in motion, they are extremely hard to seal. IMHO, FF masks are not "beginner" masks.

If you are able to breathe through your nose during the day, resting your tongue on the roof of your mouth behind the top teeth, you are probably going to be able to tolerate a nasal or nasal pillow mask which will be much more comfortable, give you greater freedom of movement, and will not contribute to claustrophobia to the same degree that a FF mask will.

My current favorite is the Philips Respironics DreamWear Mask. https://www.cpap.com/productpage/pr-dre ... -pack.html It is soft, lightweight, stable, quiet, and incredibly comfortable. The hose attachment is at the top so it will give you great freedom of movement, especially for stomach sleeping (but there is still a vent just below the nose which can be noisy if the vented air strikes the pillow or bedclothes).

What works for me may NOT work for you, so you will need to try and see. And this will only work if you can avoid mouth breathing. But a better mask may make all the difference.

[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.

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

I can tell you why; because its the gooooold standard!

[Gasper62]

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

I can tell you why; because its the gooooold standard!

Uh, what are you and your "gold standard" soapbox trying to convey ? It sucks that PAP therapy isn't doin' it for you, but, what do you expect to accomplish by continually pissing and moaning about it here on the forum ? You're really not helping the newbies with your doom and gloom diatribes. (IMO) Maybe get some blood work done, there's likely more than OSA affecting your energy levels, perhaps a new doctor can help you discover what it is..... Good luck.

[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.

[palerider]

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.

[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

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