Here is my story. Any suggestions or advice you have are appreciated.
I need help. Please help me.
All my life people had told me I had to just 'force myself' to stay on a normal sleep schedule, and then I'd 'adapt'. What finally got me to the sleep doctor was that I really, really kept trying to 'force myself' while in grad school, and I finally stubbornly managed to 'force myself' for almost a month before this big test I had. I was walking around like a drunk person, that's the only way I can describe it. I failed the test, can you imagine. I re-read what I wrote after a while and it was nonsense, it was like a stranger had written it.
So I had my first sleep study in 2011, it showed I had mild sleep apnea (I think I was a 7 AHI and all obstructive type apneas if I recall correctly). I started CPAP and I adapted to it fine, I'm so tired I never have any problems sleeping with it on. The machine always says my AHI is really low, like usually around 1 and a lot of times it's even less. Before CPAP I napped all the time, and if I napped I was fine but if I 'forced myself' not to nap I'd get a couple days in and break down and have a nap because I was delirious, but I have to admit that now on CPAP I can push through most days without absolutely *needing* a nap (not that I don't want one pretty bad, I just mean I don't get weirdly delirious without it now). Some days I still *need* the nap, it's just much less frequent. So I guess I have to admit that CPAP must be doing something.
Anyway, two years go by. I was still un-livably sleepy during the day, so I went back for another sleep study in the summer of 2013. This time the sleep doctor also did a daytime sleep latency test. I fell asleep for four of the five naps really quickly, but one nap took me nearly 20 minutes and pushed up my 'average latency' just above what the doctor says he needs for an official diagnosis. I knew exactly which nap it was, because the door to the lab got left open during that one and the clinic staff was super duper loud moving files around and it was also during a heat wave and the climate control wasn't great to begin with, so it was super noisy and crazy hot but I still fell asleep it just took closer to 20 minutes. My doc acknowledged this and worked out my average without that nap and it was crazy, like three minutes or something, and since he knew I have ADD he said even tho he can't officially diagnose me with something like "idiopathic hypersomnia" he can write to my psychiatrist about all this and get her to prescribe what he'd prescribe anyway.
Then I had a baby and things got a little messy in the middle, I had a home study at one point to adjust my pressures because I got super fat, then I lost the baby weight and the pressures had to be re adjusted down. That's all fine now.
Now here I am, two years later again and I'm just so tired still. I sleep right through my stimulants. I'm scheduled to go see the sleep doctor again. I've always been compliant with my CPAP, although I did figure out I had to start taping my mouth shut along the way. My machine says my apnea is perfectly controlled, and my pressure isn't even very high (because my apnea is mild to begin with...) but I'm still CRAZY TIRED. I'm in a constant brain fog, and it's ruining my life.
I'm early 30s now but my first sleep study was in my late 20s, I'm normal weight, normal neck size, I don't really 'fit the profile' for obstructive sleep apnea.
To complicate matters I just learned about that sleepyhead program and I downloaded my data and the vast majority of my 'event's are 'clear airway' with some hypopneas. Also, if I just scroll through the flow rate for the night there are tons of weird things in it that aren't marked as 'events'. I have no idea if this is reliable tho, and my machine only keeps the flow rate data for a week, so I'm planning to just keep downloading it so I have more of the flow rate data for my upcoming appointment. I did some basic googling and I read about cpap therapy inducing central apnea, but from what I've read it seems like there's a lot of skepticism as to whether or not that's a real thing, or if it's a thing that lasts longer than, like, a week.
I'd really like to start looking into the root cause of my sleep apnea/daytime sleepiness, since complying with treatment isn't improving things much. My sleep doctor appointment isn't until December, so there's time to go to the family doctor and have some investigations done but I don't know what to ask for. I also don't know what to make of this flow rate stuff. I've had some basic blood tests, things like anemia and hypothyroid, and that's all been ruled out. I don't know what else to ask for.
I'm so confused and I'm so tired. Please help me. Is there any advice you can give me?
TL;DR: Mild sleep apnea, low pressure, super compliant for roughly 4 years. Crazy tired still, going back to doctor in December. What should I ask for? What should I look into otherwise? Any other advice? What the heck to I make of all these 'clear airway' events in sleepyhead?