I've been back on my CPAP now for about 3 months. I head back to my sleep doctor in a couple weeks, but overall I still feel pretty awful. I use the machine most nights, occasionally I'm so tired I just pass out before I even get ready for bed and those nights I end up not using the CPAP. But when I use it I generally have it on for a minimum 7 hours sometimes up to 9+ hours and my AHI has never been more than 1 and occasionally even 0. I seem to have found a few tricks to keep leakage at a minimum, but still have a few off days now and then.
For the most part though I still feel like crap. The one thing I noticed when I used the CPAP a few years ago, and again now, is that I do have far fewer headaches. And I think for the most part my mental clarity is better than it was. I was having a lot of memory issues for a while and would have to really pause to even remember silly stuff like the word for plate or cup. It still happens now but to a much lesser degree than it was.
But I'm still quite tired and feel the urge to nap most days. I usually push through until the end of the week and by Thurs and Friday I crash after work. I may be slightly more active than I was but still have plenty of days I really would just prefer to sleep the entire day. Mornings still suck. I wake up feeling more exhausted than I go to bed most of the time. I push through and get going but sometimes as little as 2 hours later I'm yawning uncontrollably with my eyes tearing up I'm so tired.
I wake up a lot at night still. Most of the time it's a brief waking and I go right back to sleep within a minute or so. But about once a week (it was up to 3 nights a week at the start of the summer) I wake up and am awake for 2-3 hours in the middle of the night. If I get out of bed at all, whether to go to the bathroom or because one of my kids was up and needed me, I can't fall asleep again even though I feel exhausted and may have only been up for a minute or two. Occasionally, I worry about stuff but that's usually not until after I've lain awake for some time. The days after this happen are the worst. Even if i slept 4-5 hours, was up for 2 hours and then sleep for another 4 and get a total of 8-9 hours sleep that middle of the night disruption wrecks me and it takes days to feel improvement again.
I did a daytime test with my sleep study some 10 years ago and was diagnosed with hypersomnolence (sp?) because I was able to fall asleep all 5 times they had me try. But while they suspected narcolepsy I never hit REM so that was ruled out.
I really hoped that a CPAP was going to be the answer but considering I had mild-moderate sleep apnea I guess I shouldn't be surprised. The sleep doctors have suggested a few things like perhaps my brain has difficulty cycling between wake and sleep mode getting me stuck in sleep mode to a potential to still have a form of narcolepsy. Most recently it was suggested that there are some people who actually do require 12 hours of sleep a night and that I may be one of those people. Last resort they want to give me a medication like Provigil to help me be more awake and alert during the day.
It sounds very likely that they are going to order another study for me. I'd like to be hopeful it will show them something, but I don't know why it would show something now it didn't before. I do have a lifelong history of anxiety and depression, but even when those things don't feel like they are an issue I'm still not sleeping well and feeling tired all day.
I'm just wondering if there are others out there who seemingly treated the sleep apnea successfully but without significant improvement in how they felt and if they were able to figure out a cause or cure for their sleep issues and fatigue.
Sorry for the long post but thanks for reading and any input/advice.
Heather
