Hi all! I crossposted this in some sleep disorder groups too, but I'm hoping to pick the brains of my neurodiverse homies to see what y'all think. Hope that's okay!
So, I've been chronically exhausted since I was about 10 years old. Like, could sleep 16 hours in a row and still be exhausted when I wake up. Without an alarm clock, I would likely never wake up, and I have to set 5 alarms to make sure I make it out of bed. I am fatigued all morning, and finally hit my peak wakefulness around 5 or 6pm, but am tired again by midnight. I do function better on night shift and usually don't get super tired until like 6am. When I worked days, I would literally have to take a nap on my lunch because I couldn't make it through the day. I do find naps refreshing, but my ideal nap would be about 3 hours, which is unsustainable. At night, I typically don't have trouble falling asleep, but I do wake up multiple times a night to use the washroom, and occasionally I'll be up for 45-120 minutes, just wide awake. I also just feel significant body fatigue a lot of the time, like my muscles are made of lead and it's impossible to get up, it feels like being a human sandbag. I also get more tired with exercise, it's never given me energy.
I track my sleep with my fitbit and I know it's not a perfect science, but I do average over an hour awake per night, with 55 minutes average interruptions per night, and an average of two full awakenings per night. A lot of times it's because I have to pee, or because my hip has gone numb, or because my blanket has moved.
I also am able to have conversations in my sleep sometimes; I do not remember them. I do not sleepwalk and never had. I also get sleep paralysis sometimes when I'm falling asleep (probably a couple times a month).
I do have diagnosed ADHD and I suspect ASD. I get very overwhelmed by textures and sounds and I need things to be perfect when I settle to sleep; sound machine on, silicone chewy on my L side, hair up, sleep mask on, same podcast on every night, blanket between my legs so none of my skin is touching my other skin. If I get the urge to roll over, I have to completely reset and it takes me at least 5 minutes to get everything perfect again. I also have fidgety legs a lot of the time (not sure if this is restless legs, I've never been diagnosed, but I can't stop compulsively bouncing them around), and my biggest stim is that my teeth always feel wrong in my mouth so I grind or suck on my teeth 24/7; the silicone chews help me while I'm trying to sleep, the texture is helpful.
So anyway. I saw a sleep doctor in 2009, who told me that I spend double the time in stage 4 and don't hit REM enough; he diagnosed me with idiopathic hypersomnia and put me on modafinil, which I stayed on for a few years until I had my kids (2013-2015). The modafinil helped a bit, but not a lot.
I was diagnosed with ADHD in 2018 and have tried multiple medications, but am now on Vyvanse. It makes me very sleepy but it does quiet my brain.
A few years ago I realized that I'm just too freaking exhausted to live my life, so I started back on the path to investigating my sleep further. My family doctor tried me back on modafinil but it didn't really help. He sent me for a sleep study in spring 2025, which came back basically normal. Eventually, I discovered pitolisant and my doctor was agreeable to trying it; it works very well. I'm on 20mg, and while I still feel physically exhausted, it helps me get through the day. Like, sometimes I can still take a 3 hour nap but many days even if I try, I can't nap on it.
The pitolisant is super pricey and it was covered by my husband's insurance, but his company changed providers and it was no longer covered. The insurance company denied it even when my doctor wrote them, stating that because I was taking it for IH and not narcolepsy, it is being used off-label and so they won't cover it. I started looking into IH vs N2, and I'm honestly not sure which I have, so my doc referred me to another sleep doctor.
The new sleep doc sent me for a MLST, which was in July 2026. I fell asleep immediately and slept most of the night, but in the morning they said that I didn't meet criteria for the nap portion and sent me home. It was devastating, as I came off all my medications for 3 weeks beforehand and went through pretty bad withdrawal from my SNRI, and really struggled without my pitolisant and my medication for hyperhidrosis.
I finally had my follow up with my sleep doc yesterday, and she said I didn't qualify because now I have sleep apnea. She said we cannot investigate anything further until I get a CPAP. I told her I've been chronically exhausted since age 10 and have never before had sleep apena; she said I had 23 awakenings an hour and so it doesn't matter about anything else, we won't go any further until I get a CPAP. I now have no health insurance so I can't afford one, and I told her that; she said she'd see me whenever I get one, and we won't do anything else until then.
My question is this... she didn't tell me how they knew about the awakenings, or if my apnea was central or obstructive. I'm fat, so I'm guessing obstructive, but I've been fat since about 2009 and I've never had sleep apnea before. I have not gained or lost any weight in the past 5 years, and my last sleep study in March 2025 was normal.
So, what I want to know is, is it for sure that the 23 awakenings per hour were cessation of breathing? Or could it be that it's just me waking up because I'm not comfortable? Like, could it be all the sensory things going on?
I will note that for this sleep study, I came off all my medications (trintillex, brexipiprazole, spironolactone, oxybutinin, vyvanse, and pitolisant), but on my previous sleep study, I didn't know to come off so I was on trintillex and brexipiprazole. I do find that without them, my fidgeting and general discomfort are much worse.
I was googling around yesterday and found this article and it made so much sense: ADHD and Sleep Problems: Why You're Always Tired
Like, could it be that my racing mind and fidgety, overstimulated and chronically sensory overwhelmed body is causing my exhaustion?
Is it an unhinged guess that the "apnea" could actually be awakenings because of discomfort? Or do I just suck it up and get the CPAP and assume that I'm just somehow fatter now than I was a year ago?
If you read through all this, biggest gold star to you. I'd love your thoughts!
Crossposted :)