Need help! Uars, aerophagia...?

[Gourou]

Hi!

I need some advices. I am a 29 years old man, living in quebec (canada). I have been diagnosed with light-moderate sleep apnea syndrome. I am under CPAP therapy for about 3 years. From the first day I have been using a CPAP I have noticed big improvement in my life quality. I got more energy, more concentration. But it's still not quite working totally.

- I have a hell of a hard time waking up in the morning, I feel groggy for a few hours (sleep inertia?)
- I have horribles head aches
- I'm still tired. I can't watch a full movie without falling asleep

My CPAP is in APAP mode, pressure is set to 5-15 but it never goes over 6.5, sometimes 7 when i'm really tired.

I have done a few sleep studies, two in a lab and a few at home.

Without a CPAP, I have an AHI of 16/hour, which are almost only hypopneas. With a CPAP, it gets to near zero AHI, sometimes 1 or 2 / hour maximum. BUT, the two sleep studies I had in a lab had shown that I still have an RERA (Respiratory effort-related arousal) index of 40 / hours even with the CPAP on. I *assume* these microarousals are the reason why I feel so shitty in the morning and that I still don't feel I'm getting a restfull night even with no AHI.

I am "kinda" being followed by a pneumologist. He kept saying everything was fine and that I should be OK according to the report, I had to show him about the microarousals. He finally asked me to increase my pressure, to 7. I have tried it for two nights and now it feel even worse. The first night I was using my Swift LT mask, so I had air going out from my mouth. The 2nd night I used a full face and I had major aerophagia, I woke up with terrible tummy aches, I fart and burp all day. Plus I don't feel any more rested. When the pressure is 9 or higher, it wakes me up.


I suppose my hypopneas are controlled by my CPAP, but I stil have UARS (upper airway resistance syndrome) which cause me to have lots of microarousals. Those microarousals prevent me from getting fully rested.

I feel a bit lost here, my doctor doesn't seem to have any idea of what to do, he said I was a "tough case". Plus it's very hard to see him, appointments take 3 months to obtain. He suggested me taking stimulants in the morning to help me get rid of my sleepyness. Yeah why not take cocaine while we're there?

If anyone have any ideas, inputs or something helpfull to say I'd be more than glad to read it

Thank you !

PS: Please apologize for my english as it is not my first language

[Zigs]

I don't have a lot of great advice, as I'm new to this as well, but I want to encourage you to see a different doctor if you aren't satisfied with what your doc is saying. I don't think "you're a tough case" and "take some stimulants to wake up in the morning" is satisfactory, in my opinion!

I did find it really interesting what you said about still having 40-plus respiratory efforts per hour, even on CPAP! I have been diagnosed with UARS/sleep-disordered breathing with the RERAs occurring frequently, and not many apneas. I had asked if CPAP would help me even though I don't have "apnea" proper, and they assured me it would still help keep my airway open. So that's interesting that it doesn't seem to be helping reduce your respiratory efforts...I haven't been on it long enough to know yet if it will work for me!

[WestCoastCdnGrl]

Threadjack for oh so brief a moment...

Vous écrivez en anglais plus mieux que moi et mes ami(e)s parlent/écrire en français! (Nous habitons à Vancouver)
(You write in English better than my friends and I speak and write in French! We live in Vancouver)

Bonne chance avec votre appareil PPC - I hope you find relief soon!
(Good luck with your CPAP machine)

[HoseCrusher]

I am not convinced that increasing pressure provides relief to arousals that are not obstructive related. I believe the goal of xPAP therapy is to remove the obstructions and allow you to breathe while asleep. It may be that you have something else going on.

[Gourou]

I am not convinced that increasing pressure provides relief to arousals that are not obstructive related.

You are probably right. I have taken a look closely at my sleep study results and I don't have less microarousals at higher pressure. The only thing that changes is that I have less sleep level change (ex: sleep stage n1 n2 n1 n2 n3 n2 etc) and also that much air goes in my stomach. :-\

[ozij]

A number of things I would try:

• Running the machine at fixed pressure - start with 6 if you can tolerate that. Give yourself a week or two a that, and then try 0.5 more. APAPs can cause microarousals by the way they change pressure, and those can disturb your sleep.
• Alternatively, you may simply do better if you raise the bottom of the range a bit -- respiratory effort does not make your machine raise the pressure -- and you may be having RERA's while the machine is idling near the bottom of the range, waiting for something to push it higher. By raising the minimum -- even by 0.5 -- you may give yourself better sleep. Here too, keep that change for a week or two before you raise the pressure higher.
• And just in case - I would also try nasal rinses (nasal irrigation) -- see for instance http://www.neilmed.com

Welcome to the forum, and good luck

O.

[phoebe368]

I used to have aerophagia too but after switching to an auto-bipap it went away. Auto-bipap is WAY better than cpap - trust me, I 've tried all of them - cpap, auto-cpap, bipap and now auto-bipap. I have an unusual case such as yourself where I have an RDI of 14, all hypopneas but have very debilitating symptons. I had the mma jaw advancement surgery a year ago and still have an RDI of 14, all hypopneas. fortunately, the auto-bipap seems to be working.

[phoebe368]

By the way, I recommend reviewing the past posts by Dr. Barry Krakow MD (BarryKrakowMD) he is a sleep specialist in Albuquerque, New Mexico who posts on this forum from time to time. He is quite knowledgable about UARS and has mentioned that auto-bipap is better for UARS.