CPAP Newbie... Ready to throw the machine out the window

[NinjaTurtle]

Hi all,

I visited a sleep specialist in August after not sleeping well for over a year and a half. I always assumed my sleep issues were depression-related (Had sleep onset insomnia a couple years ago, but it hasn't bothered me since. I fall asleep fast, within 5 minutes, but I wake up often in the night. I might wake up consciously 12 or 15 times, but fall back asleep within a couple minutes. I also have a lot of nightmares. I never really feel rested). But they persisted even after I got my depression/anxiety to reasonable levels. My psychiatrist tried me on all kinds of medications to help me sleep (clonidine, hydroxizine, even just melatonin and magnesium), but nothing helped. It started getting so I would fall asleep at work, waiting for water to boil, etc, and I couldn't focus well.

They did a sleep study suspecting narcolepsy, but I walked out with a diagnosis of OSA (my AHI was almost all hypopneas, something like 29.8 ). I have a family history (small airways) so I wasn't too surprised. I was hopeful that this would finally be the answer for me, and set up my CPAP.

The first couple days were okay... a little trouble getting used to the mask on my face, but I got over that anxiety with some acclimation and practice. I fell asleep fine, didn't have trouble wearing the mask for 7ish hours, had AHI less than 1 and my machine reported that I had ZERO leak (I don't know about that, but sure). I had some intense headaches when I woke up, which had never happened before, but the tech told me my brain was getting used to the pressure. I was tentative, but still positive.

Then I noticed that the air was blowing my mouth open in the night. I've always been an intense grinder, so that's never been an issue for me. I got a chinstrap, but the problem isn't that my mouth is opening because my jaw is relaxing, it's that the air is literally finding the path of least resistance and blowing out my mouth, so it's still happening. It makes an INCREDIBLY LOUD whistling/rushing sound and it wakes my partner up, even though she was never bothered/awoken any snoring I may have done. She has to wake me up so I can close my mouth a couple times a night. I called my provider to ask about it, and they lowered my max pressure. The machine is APAP, I believe, and it was set for 4-20. She lowered the max to 14, since the study said my ideal was 8. I haven't seen any changes of my mouth opening in the month-ish since she lowered it though.

And of course, the maintenance insomnia has stayed exactly the same - the whole reason I started this to begin with. I wake up in the night constantly, only now I'm SUPER AWARE of the mask on my face. I've always been a stomach/side sleeper, but the mask is really only comfortable (no air leaking all around my face and whistling in my ears) if I lay on my back, which feels really unnatural. Now I'm getting so frustrated when I wake up in the night that I just cry. Sometimes I take it off and get a little good sleep before I have to get up, but I'm really afraid I'm going to get in trouble with my insurance provider. I don't know what to do. I feel like I've made our quality of life so much worse, and all for nothing - the CPAP isn't helping.

I'm trying to maintain a positive attitude, but it's really pulling up all my depression again. I feel so frustrated and exhausted. I'm just about ready to send it back and accept that my life will be 8 or 10 years shorter. I don't want to deal with this for the next 70 years, and at least my partner should be able to sleep, even if I can't.

TL; DR:
I want to give up on CPAP. My sleep has stayed exactly the same, and it's made my partner's significantly worse. Any tips on either stopping air blowing out your mouth or helping with sleep maintenance insomnia? I'm at my wit's end. Thanks for any advice!

[palerider]

I called my provider to ask about it, and they lowered my max pressure. The machine is APAP, I believe, and it was set for 4-20. She lowered the max to 14, since the study said my ideal was 8. I haven't seen any changes of my mouth opening in the month-ish since she lowered it though.

Should have raised the min pressure to 8, and left the max alone. they so often get that wrong.

[Sluggish]

Don't give up. At least not yet.
Also, post your results from sleepyhead software so we can see the leaks etc. You obviously DO have some leaks if air is constantly blowing out your mouth.
Try the $15 neck brace from CVS to keep your mouth closed. Use it is conjunction with the chin strap if you have to. If the mask exhaust is blowing on your partner even if your mouth is closed, I might suggest the P10 mask with diffused exhaust ports. For me it was/is a process of eliminating the problems one by one until you get something that works. I'm about 8 months in and still struggling a bit if it makes you feel any better.

[TropicalDiver]

At the core, what you seem to be describing is an annoying air leak from your mouth. And you tried the chin strap. Leaks can be a therapy problem (huge leaks can thwart effective treatment) but annoying ones can cause you to give up.

For me, the answer was a full face mask (currently the ResMed Airtouch F20) with an anti-leak strap from pad-a-cheek. Finding a mask type, model, and size that works best for you is critical. There are tons of options out there. My DME allows me to typically try on a mask (for a few minutes -- with some pressure) and then allows a swap within 30 days if it is not working. I only try masks that seem pretty good during my few minute trial). I have also found additional straps to be helpful (other go for liners, etc.) -- they have improved a good fit for (but will never fix a bad fit).

On to pressure settings. The point Pale Rider is making is this: your machine has a set range it is supposed to adjust within and the min is often more important than the max. If you post some data (links at the top of the forum explain how and what--and please just reply to this thread), folks here can help you optimize the pressures. If the min is too low, your machine is letting problems begin to occur and then is reacting to address them. That reaction is not instant (leading to disturbances) and can then result in higher pressure than would have been required if the problem had never occurred.

So now you have the worst of all worlds, therapy that isn't helping and annoying leaks. Oh, and that low a starting pressure can make it seem like you aren't getting enough air. I might also try a nightguard for the grinding.

If it were me (and I am not a medical professional), I would work on a new mask, up the min to at least a six, use a night guard, and monitor the results with a graph. Also, a good sleep doc will help you work through these issues!

[kteague]

Haven't thrown a machine out the window, but have thrown a mask up against the wall. Just a few thoughts here... Sounds to me like a bit of tweaking of your settings will get your treatment dialed in and hopefully some of your sleep disturbances will resolve. About the mouth leaks - it may be easier for you to just allow yourself to mouth breathe in a full face mask. That's a different sound than mouth leaks. Or you can try the options out there such as chin strap, mouth taping, denture adhesive on lips, cervical collar, etc. I used about every option in my early years. It wasn't until I read on here about people finding success training themselves to use the technique of using suction to secure the tongue to the roof of the mouth that for me mouth breathing became a non issue. Even during my waking hours I practiced it until it became second nature. Really helped my sleep be less of a hassle. If after optimizing your settings and getting the mouth leaks worked out you still have fractured sleep, you may need to try to rule out other possible contributors. A couple common ones are medication side effect and jumpy legs. Good luck with everything.

[moonboots]

I found these SomniFix Mouth Strips good for when my mouth was filling with air, also i found it took me almost 12 months before i got the full benefit from my machine,i used to wake loads but only wake once or twice now.

[NinjaTurtle]

Thanks for the support, everyone! I'm a little less ready to go over the edge today haha. I'll definitely try some of the mouth closing tips - I've been debating collar/tape so I think I'll play around and see what works. The good news is I've got a mouthguard - it's a custom mouthguard/retainer I got along with a bottom retainer about 10 years ago when I got my braces off in high school. It's about 1/8 in thick, hard on the outside and soft on the inside. I didn't believe I needed it until a few months had passed and I noticed I had put cracks in it at every tooth point of contact

I'm posting my last two days of data here - turns out my min was at 6, not at 4. 4 is just the ramp setting. And it seems she lowered my max all the way down to 12 from 20, do ya'll think that might be part of the problem?

(4 is the time I finally allow myself to take the mask off - I'm really paranoid about compliance)

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[Pugsy]

If you rarely hit the max setting of 12 and/or don't spend much time up there pegged out...doesn't really matter what the maximum is set at if you don't hit it.
The machine is only going to go where it thinks it needs to go and if it doesn't need to go higher it won't.

I doubt that lowering the max did much of anything unless your other reports showed a lot more time hitting 12 than this new one.
So exactly what is the problem now?
Why can't you get more than 4 hours?
Are you sleeping the bulk of those 4 hours?

[NinjaTurtle]

Hey Pugsy,

Why I can't get more than 4 hours is really the question. I'm awake on and off - asleep for half an hour or so, awake for 5 minutes or so, pretty much all night. It's been that way for almost 2 years and has persisted even with the machine. It feels like I'm stuck in a weird twilight state between wake and sleep, and I feel super exhausted all the time. I usually end up taking off the mask after 4 hours because it's annoying and I need 4 hours a night for insurance compliance. I feel like if I could just sleep a solid block of time, it would be easier - I'd feel more awake and I'd be keeping the machine on longer by default. I'm hoping the CPAP will eventually stop the waking up - my provider tells me I just need to keep at it. She was kind of weirdly chill about it though. She even suggested wearing it during the day if I can't wear it for 4 full hours at night. I thought asking some other folks who are actually have experience living with OSA might be a good idea!

[Pugsy]

Wear the mask with machine on while watching TV or reading.
It will help with 2 things...your compliance hour needs and help your brain to get adjusted to having the alien on the face.
Your insurance only cares if you use the machine for at least 4 hours out of a 24 hour period. Doesn't have to be consecutive hours.
Eliminate that stressor because any stressor feeds the insomnia monster.

While the cpap mask/machine stuff might be a factor in your sleep maintenance insomnia it obviously was present long before you started cpap so we can't blame it totally on mask/machine issues.

There's also a cold hard fact of life that your sleep maintenance insomnia isn't related to sleep apnea and instead being fed by something else. The best cpap therapy with the most comfortable mask in the world can't fix a problem that is not related to sleep disordered breathing. People can have more than one problem at a time...trust me..I have first experience with that along with some sleep maintenance issues of my own and they are totally unrelated to sleep apnea.

Read this
http://adventures-in-hosehead-land.blog ... er_19.html
RobySue has had insomnia issues all her life but adding in cpap made them worse.
In her blog she mentions some excellent resources/books to read that could help a person either come to grips with things or maybe offer ideas to lessen the problem.

Can you safely take plain old Benadryl? If so, pick a night where you don't have to work the next day and it doesn't matter if you are a bit foggy in the morning. Take 50 mg about an hour before bedtime. Probably won't do much but try it anyway just in case.
Then pick another night where you don't have to be somewhere the next day and take 100 mg of Benadryl.
You won't be able to sleep 8 hours most likely but lets see if you can get just a few hours of solid sleep with no wake ups.

Read this article...and while it is talking about alcohol and sleep cycles and stuff...the information about needed sleep stages and why the wake ups mess with how we feel is going to pertain to anything that disturbs our sleep.
https://www.sleepfoundation.org/sleep-t ... ects-sleep

Can you normally breathe through your nose just fine or do you have chronic nasal congestion issues that you can't clear up.
If you normally can breathe through your nose just fine but just mouth breathe out of habit consider a nasal pillow mask with tiny footprint. If you mouth breathe a little...so be it. Worry about that later because at this point 30 minutes of maybe mouth breathing out of 4 hours of sleep might still be preferable to the issues a full face mask might be adding to things and feeding that insomnia monster. There are worse things in life than a little mouth breathing and taking the mask off after 4 hours and 2 minutes and sleeping the rest of the night without any cpap therapy is one of them.

[palerider]

I would suggest more pressure, say 8-20, (just get the max pressure out of the way, there's no reason to raise it.).

You're having flow limitations, and those can disturb sleep, raising the min pressure *MAY* cause less sleep disturbances... it's worth a try.

[bobsocia]

I certainly don't have the same issues as you , but one thing in common is these machines don't help insomnia they only reduce ahi. most of mine are central apenea . The number or hours I sleep has not improved in the slightest. Supposedly they help quality of sleep whatever that means