Still noncompliant with CPAP

[Yankee]

I'm new to this forum. I've been on CPAP for almost 2 years but have never gotten used to it. Problems occur with the mask (like leaking or whistling) only occasionally, but I simply do not like having it on my face, and I remove it, often after only an hour or two. I feel that having the mask on my face keeps me from falling asleep, or wakes me up. I have gone as long as 3 weeks without problems, but then I might skip some nights because of changes in routine or other variables (hot summer nights can be a problem) and I can't recover my tolerance. I know about the risks of apnea and hypopnea, but I'm one of those people who never had symptoms--no fatigue in the mornings, no morning headache, no daytime sleepiness, no health concerns. My doctor recommended the initial sleep study only because I reported waking too often late at night. CPAP does not make me feel better or more energized--in fact, I feel a little MORE tired in the morning because it keeps me awake. The nurse practitioner wants me to get out of bed instead of lying awake, but being up in the wee cold morning hours is quite unpleasant and I almost never try it. Instead, I take the mask off and fall asleep! Has anyone been through this? What do you say to yourself when you are lying awake, fuming at the mask?

[newhosehead]

[quote="Yankee" What do you say to yourself when you are lying awake, fuming at the mask?[/quote]

First of all, welcome! You have come to the right place for answers and support. I am about 5 months into treatment and there have certainly been some nights like you describe. What do I say to myself? I say...If you take this off and go to sleep without it, it will be easier to do it again tomorrow night and the next night and the night after that, and so and so on and so on. I need this because I am not getting enough oxygen at night. I need this because I stop breathing at night. I am going to leave the damn thing on because I have to have it. I am diabetic although I do not have to take insulin, but I think about CPAP that way sometimes. If I did need insulin and hated the needle, I don't think I would say, Oh the Hell with it, I'll just skip that.

Seriously, I know it can be rough and it must be even worse when you don't have the symptoms to motivate you. Just curious, how many masks have you tried? I have been lucky enough to get a pretty good fit with my second try, but I know there are many folks on here who have been through several of them.

Also, I don't believe you listed your equipment. If you will add that information to your profile, I am sure others will weigh in on possible problems and solutions. Don't give up.

Jeanette

[oscar98]

Perhaps as mentioned above it's time to try a new mask. I was having a lot of trouble adjusting to the mask as well and getting a new one helped greatly. I still have a few nights where I woke up and literally had an argument (in my head of coarse) with the mask about rather or not it was staying on me. I would lay there and argue myself back to sleep. Those wakes ups got further and further apart and it got easier and easier to go back to sleep with the mask on. I just had to convince myself that I was not taking it off no matter how uncomfortable and awkward it felt. I'm not at a point that when I wake up (for other reasons) I rarely even notice the mask is there.

I've only been at this for a month and I honestly believe that attitude is the most important ingredient. You must convince yourself that you need this and that you will do whatever it takes even if it means lying awake arguing with yourself. You may not have health problems yet but as you mentioned you know the risks. For me the most intolerable side effect of sleep apnea is that I used to have a mind like a steel trap and now my memory is so bad I feel like an idiot most days compared to what I used to be like. I hope you never have to experience that.

[mars]

Hi Yankee

I would generally agree with what has already been said. Not having symptoms makes motivation that much harder. However, you really need to register, and show your equipment to get the answers you want.

The results of your sleep study would be a help too.

I suggest you buy an oximeter to find out what your oxygen level is when you sleep without the mask.

And welcome to the Forum

cheers

Mars

[Photomatt]

Ya gotta just keep trying. I spent the first years after diagnosis with my CPAP machine in the closet. Just couldn't get used to it.

Finally after enough nights dreaming I was smothering and waking up in a panic gasping for air I tried again.

Now, I can honestly say I look forward to putting the mask on. If feels good getting that blast of air. When I wake up in the morning, I am reluctant to take the mask off.

Try, try again. It can really help.

[kteague]

Yes, do post your equipment. If your machine is not data capable, maybe you have have your doc order a 2 week trial on an autopap as it will determine your pressure needs. and you can see if that is consistent with your current setup. If you treatment is not therapeutic it could account for your difficulty adjusting. Also, are you using a ramp feature, where the pressure starts low then gradually increases? A low ramp can make some too uncomfortable to relax and go to sleep. Once you know that your treatment and equipment are what they need to be, you may just have to force the issue.

[Janknitz]

If you can go three weeks at a time on CPAP, you can go for EVERY night. By what you've said, you have a very low tolerance for discomfort, and for CPAP to work for you, you are going to have to resolve to put up with some anyway.

What do you say to yourself when you are lying awake, fuming at the mask?

First, make sure that the mask you have is the most comfortable possible mask for YOUR face. There are a lot of different masks out there, and maybe the one you have is not the most comfortable for you. Work with your DME provider or an online provider with return insurance, and find something you don't hate (notice, I did not say you have to LIKE it, but you should not absolutely hate it!).

Second, you cannot lie there and fume at the mask. It's counterproductive. You won't sleep, your adrenalin will be rushing, and your feelings and thoughts will be totally negative. You need to distract yourself away from fuming at the mask.

Try learning some simple relaxation techniques that will require your focus and attention while allowing your body to relax and perhaps go to sleep. Try some distracting (but not too stimulating) sounds on a sound machine or an MP3 player. I've always been great at falling asleep in front of the t.v. so dialog becomes a form of "white noise" for me. So I listen to free podcasts--interesting enough to capture my attention away from the discomforts of CPAP, but not so stimulating that I cannot fall alseep listening to them.

You don't mention what your sleep study showed and the reason you are willing to have done CPAP so far. Oviously, it must have been enough that you have been willing to try as much as you have and put out a cry for helpl. Those are good signs that you can succeed, but you will have to reslove to pt even more effort in. Good luck!

[allen476]

I'm new to this forum. I've been on CPAP for almost 2 years but have never gotten used to it. Problems occur with the mask (like leaking or whistling) only occasionally, but I simply do not like having it on my face, and I remove it, often after only an hour or two. I feel that having the mask on my face keeps me from falling asleep, or wakes me up. I have gone as long as 3 weeks without problems, but then I might skip some nights because of changes in routine or other variables (hot summer nights can be a problem) and I can't recover my tolerance. I know about the risks of apnea and hypopnea, but I'm one of those people who never had symptoms--no fatigue in the mornings, no morning headache, no daytime sleepiness, no health concerns. My doctor recommended the initial sleep study only because I reported waking too often late at night. CPAP does not make me feel better or more energized--in fact, I feel a little MORE tired in the morning because it keeps me awake. The nurse practitioner wants me to get out of bed instead of lying awake, but being up in the wee cold morning hours is quite unpleasant and I almost never try it. Instead, I take the mask off and fall asleep! Has anyone been through this? What do you say to yourself when you are lying awake, fuming at the mask?

You don't necessarily have to have symptoms. Your body will learn over time to deal with the stress that apnea creates. By the time you show symptoms, it may have wreaked havoc on your body and you are very close to death or disability.

We do need to know what equipment you have especially your mask. We can not tell you what to do to make it more comfortable without knowing what you have. It is kind of like calling a garage and asking how to fix your car without them knowing what car you have.

Comfort........Well many here, I included, have gone through several masks searching for the most comfortable mask we like. For me, it was giving up on full face masks and going to a nasal pillow type mask. Have you tried different masks? Did you pick out the mask, or was it handed to you with your machine? What is your mask?

Allen

[Yankee]

Wow! Lots of advice that hits home. You guys are great. I admit I occasionally have episodes (when I sleep without CPAP) when I feel that I'm smothering and wake up terrified. It would be nice not to do THAT anymore! To answer your questions, I'm on my second mask and it feels fine as long as I'm not actually trying to sleep!! But I'll keep trying by following your advice--remembering how important this treatment is for my health, staying determined but relaxed. My original sleep study showed severe OSA with an RDI of 45.7 and a total of 197 obstructive hypopneas during the night. You are right--it's important to keep working on the goal of tolerating CPAP, like joining this forum and finding out what others have been through. Also, I went to a free CPAP clinic today and the respiratory therapist found a problem with the way I was fastening the straps on my mask. I think the change will make it more comfortable and might make me less likely to wake up.

Machine: REMstar Plus M Series
Mask: Zest Nasal Mask
Humidifier: REMstar M Series Heated Humidifier

[allen476]

Wow! Lots of advice that hits home. You guys are great. I admit I occasionally have episodes (when I sleep without CPAP) when I feel that I'm smothering and wake up terrified. It would be nice not to do THAT anymore! To answer your questions, I'm on my second mask and it feels fine as long as I'm not actually trying to sleep!! But I'll keep trying by following your advice--remembering how important this treatment is for my health, staying determined but relaxed. My original sleep study showed severe OSA with an RDI of 45.7 and a total of 197 obstructive hypopneas during the night. You are right--it's important to keep working on the goal of tolerating CPAP, like joining this forum and finding out what others have been through. Also, I went to a free CPAP clinic today and the respiratory therapist found a problem with the way I was fastening the straps on my mask. I think the change will make it more comfortable and might make me less likely to wake up.

Machine: REMstar Plus M Series
Mask: Zest Nasal Mask
Humidifier: REMstar M Series Heated Humidifier

Well I'm glad that you have a new found sense of sticking with it. As far as your mask goes, the nasal masks sometimes can be just as cumbersome as a full face mask and have most of the same inherent problems. Try searching on here for your mask for better sealing tips.

If you are consciously aware of the mask on your face and that is why you can't sleep, you might want to look at the Swift FX nasal pillow mask. Pillows do take a few nights to get used to, but, at least in my own opinion, they are worth it.

Allen

[ozij]

Once I got a mask that was reasonably comfortable I made a simple deal with myself:
Bed time = mask time.
If I can't sleep with the mask on, I get up, and do something relaxing till I feel tired, then I
Go to bed and put mask on.
Can't sleep with a mask? Then I get up, do something relaxing till I feel tired etc.
Repeat as necessary.

The one thing I don't do is fume and try to force myself to sleep. You can't force anyone to sleep. Also, I do my best not to try and monitor whether I'm asleep or not, and as I am settlin down to sleep I know -- all conscious and unconscious levels of me know that "If I can't sleep with the mask I will get up".

That knowledge is crucial, since, unless your unconscious is utterly convinced the you will not sleep without the mask, it will keep you from falling asleep till the mask is removed. Once your unconscious understands that the options are "sleep with the mask" or "get out of bed" it will let you fall asleep with the mask on.

Good luck
O.

[drubin007]

I read your post with great interest.

Let me share my story.

I went to the doctor (ENT) for a clogged ear that would not go away... While there I also wound up getting an allergy test, finding out I am allergic to nearly everything in my life, and a date set for a sleep study as I also mentioned that I snore, and come from a long lineage of snorers. I left there and felt I should be in hospice. (They also gave me about 14 different sprays to shoot up my nose and things to do, encasements for mattresses,etc).

Flash forward, im told I have OSA, and need surgery or a cpap. I did the homework and said hell no to surgery, give me a mask. Started with nose mask, but was abotu to quit after a few nights and blood dripping down my nose. Then moved to nasal pillows (Optilife) which worked. nearly a year later, I use the Opus360 nasal pillows and life is good. Sometimes I use a chin strap, but were all different. Back on topic here. They said I had OSA and the numbers proved it. here we are, nearly a year into threatment (maybe its been a year, really not sure). In any event, I have been 100% compliant, have not missed a single night of the hose. travelling, camping, you name it and I have closed my eyes with air being pushed up my nose. The irony of it all? I feel exactly the same. No different at all. The only variable that has changed in my life is I no longer snore (so im told of course). Many many times I question why do I continue to do this? The only thing that keeps me compliant is looking at my numbers from the sleep study that show with and without a mask...
Short term it probably would not change me by not wearing it... But long term I do not want to become a burden to my family because I was selfish and chose not to wear something that I knew deep down was helping me.
Don't get me wrong, wearing a hose to sleep every night sucks and sucks badly. I am actually envious of people in here that feel benefits from it. I am thankful I never fell asleep while driving or had the bad symptoms so many others here have had, but do wish I could feel a true benefit to confirm what I am doing is working.

Sorry to be so long winded, but you hit home with your post yankee. Hang in there, find a mask that works for ya.

[drubin007]

Oh and a little caveat to my story....

I started doing allergy shots (build up an immunity to all things you are allergic to) last July... started recieving them twice a week, now I am down to a higher concentration and once a week. Like cpap, no difference that I can tell.
My original complaint was every night as I got into bed I would be congested. Sadly, I still am. I seem to be the minority
that has not seen the realized benefit of immunotherapy. Like cpap, I continue to do it, in hopes that one night I will be able to nose breathe without the help of my heated humidifier on my Fisher and Paykel.