More issues specific to yourself need to be evaluated by your sleep physician to ascertain just what is the "big issue" that needs to be addressed.
Lastly, you might consider discussing alternative treatment methods for OSA with your board certified sleep specialist if you believe tolerance to PAP to be your biggest issue.
I have spent the last 3 1/2 years working with (multiple) sleep physicians who are board certified in sleep medicine and they are out of ideas and so am I.
And while the problem started out being tolerance of PAP, tolerance of PAP does not seem to be the continuing cause of my problem.
My sleep problem long ago morphed into some kind of insidious problem where I'm simply not getting very restorative sleep in spite of the following:
- I can get to sleep quickly (within 10 minutes of going to bed) with the PAP---as long as I'm sleepy enough,
- I sleep well enough to remember only a few wakes (as in 2-4 remembered wakes) when I wake up in the morning after a typical night (but the SleepyHead data indicates there are many more wakes than I remember),
- I no longer wake up in serious pain from aerophagia on most nights---as long as I stick with my current tight Auto BiPAP settings,
- I have a total estimated sleep time of 5 1/2 to 7 1/2 hours on most nights (I've never been one to sleep more than 8 hours unless I'm coming down with the flu or other illness),
- I wear the mask the entire time I'm asleep every single night,
- and I have good PAP data in terms of AHI (almost always less than 5.0 and usually less than 2.5) and leak data (total leaks right at the expected leak rate for my mask for most of the night, every single night).
And to be clear on the aerophagia issue: When I use my BiPAP in its current (nonsensical) narrow Auto range with min EPAP = 4, max IPAP = 8, the aerophagia is under control: I don't wake up with a basketball sized rock hard stomach. If I reset the BiPAP to a fixed pressure of 8/5, however, the aerophagia comes back with a vengeance, and everything goes downhill very quickly once the aerophagia comes back. Hence I am someone who does NOT do better on fixed pressure mode.
And to be clear about what the perceived problem with my sleep actually is:
I think I am getting between 5 1/2 and 7 1/2 hours of sleep every night and I remember only 2-4 wakes on most nights, so I feel as though my sleep is relatively continuous most nights. But more often than not, I wake up feeling unrefreshed and not fully rested. And more often than not, my energy level is not enough to get me through my day and brain fog is a serious problem.
And that's just as true for the nights where I think I got 7 to 7 1/2 hours of sleep and don't remember more than 2 or 3 wakes during the night as it is for the nights where I think I only got 5 hours of sleep and remember 3 or 4 wakes. And on the nights where I remember more than 4 wakes, or I remember a restless period or two, I wake up feeling pretty wasted and have very little energy the whole next day.
Last summer (2013) my current sleep doc was puzzled enough about my on-going and (at that time)
worsening sleep problems that he ordered another round of in-lab sleep tests. The results were not particularly enlightening:
- The PAP-less night confirmed that I do have OSA (although the AHI on the PAP-less night was only 15.1 this time instead of 23.1, like was on my original diagnostic study back in Aug 2010.)
- The titration night confirmed my OSA is well controlled with BiPAP set with IPAP = 8, EPAP =5 (and the doc didn't recommend changing the tight Auto BiPAP range to a fixed pressure setting).
- The sleep efficiency on both nights was pretty miserable, and the total sleep time with BiPAP was less than the total sleep time without PAP.
- On both nights my answer to the question, "How much sleep did you get?" in the post wake survey indicated that I thought I got about 30 minutes more sleep than the EEG data says I got. (I'm that rare insomniac who gets less sleep than I think I get; that's been clear on all six of my sleep studies.)
- There were far too many spontaneous arousals and wakes on both nights.
- There were no PLMD problems on either night.
- The initial latency to sleep was actually pretty good, particular considering that "Lights Out" was two hours before my usual bedtime, but on both nights, I woke up within 20-25 minutes of sleep onset and started tossing and turning and had serious problems getting back to sleep that lasted for a couple of hours according to the sleep data. (On both nights I was not aware of the fact that I had fallen asleep for 20 minutes at the beginning of the night; I thought it took me 1-2 hours to get to sleep on both nights.) On the titration night, I eventually gave up trying to get (back) to sleep and called the tech and asked if I could please read for a while. I read for about 60 minutes (according to the sleep study data, there was no clock in the room) before feeling sleepy enough to try to go to sleep again.
- When I sleep without a PAP, I wake up with significant hand and foot pain that is not there when I sleep with a PAP. (That's from my own notes about the experience.)
Since the data from the in-lab sleep tests showed a large number of spontaneous arousals (and nothing else unusual) and my guesstimate of how much sleep I got was more than the EEG data indicated I got on the titration study, the sleep doc ordered an Acti-graph test where I wore an Acti-graph bracelet for a ten day period. The Acti-graph data was analyzed to determine how many likely awakenings I had each night in my own bed during the study period. My sleep log at the time indicated that I was remembering about 3-4 wakes each night; SleepyHead was showing that I was turning the machine off and on about 5-6 times a night. The Acti-graph data showed I was having an average of 9 wakes per night with an average of length of about 5.5 minutes. So again, the data indicated that I was waking up
more frequently than I thought I was waking up at night back last August. And as far as I know, there's no reason to think that situation has changed much since then.
So at this point: The doc and I both know the problem is that
I have an excessive number of spontaneous awakenings and arousals at night, and I remember only about half of the wakes in the morning. And the sleep doc's idea is that all the spontaneous wakes and arousals are what's causing my daytime problems. But because there is no identifiable
cause of those wakes and because
I don't remember half or more of the wakes, there's not much that can be done about them using the usual CBT-I tools, including tightening up on my already pretty good sleep hygiene, which I discussed in the previous reply.
In the previous War on Insomnia the only thing that really seemed to help reduce the excessive number of spontaneous arousals was a severely sleep restricted schedule of no more than 6 hours in bed at night. When I started the CBT-I on Dec. 31, 2010, wake up time was defined to be 7:30 and bedtime was 1:30 or whenever I got sleepy---whichever came LATER. I did that for over a year before slowly allowing myself to increase time in bed by moving wake up time from 7:30AM to 8:30AM. (I tried moving bedtime back towards 1:00AM, but every time I tried, the sleep fragmentation became worse.)
So the Ambien is a crutch right now---that's the language the current sleep doc has used. He doesn't expect Ambien to fix my problems and neither do I, but it can help them from getting substantially worse until either he or I has some other idea for tackling what's going on. The sleep doc also has told me that I do have
reasonable expectations about what a decent night's sleep for me should/could look like: All I want is to be able to go to bed between 1:00 and 2:00, sleep reasonably well with no more than 2-4 short wakes that I either don't remember or don't remember clearly, and wake up around 8:30 or 9:00 feeling rested and reasonably refreshed and in no pain. And I'd like this pattern to describe
most of my nights--as in 4-6 nights every week instead of describing 2-3 nights a week at most.