Less than 0.5 events per hour after a year+ but still exhausted

Hi all,

I've posted on subreddits about this a few times and gotten conflicting advice. I am planning to talk to a doctor about this as soon as I can, but I don't have a general practitioner in my current town so that makes things tough. In the meantime, I'm trying to do all I can.

I got diagnosed with sleep apnea and got my CPAP in November of 2023. My apnea is technically mild, but I'm almost certain I had it for nearly a decade before getting diagnosed (shitty doctor who didn't take me seriously, long story) and it absolutely destroyed my health. By the time I was listened to, I'd ended up in the E.R. multiple times with symptoms similar to heart attacks, and blacking out randomly. I couldn't function at all, was too tired to even stand up for more than a few minutes at a time.

So, finally, I got my cpap. I had zero trouble adjusting to using it; I was desperate enough for a solution that any discomfort was totally irrelevant to me. And I did notice improvements, slowly, over the first few months. But then it seemed to plateau. I would have thought I'd be doing a lot better by now, but I'm not. Instead of my body actively shutting down, I'm now just barely functional enough to get through the day. But I still can't work, I can't go out for long periods of time, I still feel like I'm fighting not to fall asleep every minute of the day, still so tired I'm dizzy.

My events per hour are almost always under 0.5. In the MyAir app I've been scoring 100 basically every night. I've adjusted the pressure on my CPAP multiple times, it doesn't seem to make any difference to how I feel.

My thyroid, vitamins, etc are all fine. I eat extremely healthy, and try to exercise- but that's tough when I'm still too tired to see straight.

According to some people on reddit, my OSCAR data is pretty solid, nothing that indicates anything is particularly wrong (although if anyone here is willing to take a close look at it I'd be super grateful).

So I'm kind of at a loss here. Any ideas as to what to do (other than talk to medical professionals, bc like I said, I'm working on it) I would greatly appreciate.

How many hours of sleep (real sleep and not just laying in bed trying to sleep) are you averaging?
Are those hours of sleep fragmented with multiple wake ups for some reason or other? If so, any idea why?
Do you take any medications of any kind...if so what?
Do you have any other physical or mental health conditions going on?

It wouldn't be impossible for something other than apnea causing problems.

Adding to Pugsy's very important questions:

1) How much time do you actually spend in bed? How much of that time is spent trying unsuccessfully to get to sleep or to get back to sleep?

2) Do you have a regular wake-up time for the work week? Do you try to get up at the same time on weekends?

3) Do you have a regular bedtime? How often do you go to bed when you are not sleepy? Please keep this in mind: There's a difference between feeling tired/fatigued and feeling sleepy. Going to bed when you are fatigued but not sleepy often winds up leading to problems getting to sleep and staying asleep.

4) When you find yourself awake in the middle of the night, what's the first thing that pops into your mind and what do you typically do?

5) How much caffeine do you consume in a typical day? How late in the day is the last time you have something caffeinated?

6) Do you use alcohol, marijuana, or other recreational drugs? They can all affect the quality of your sleep.

How is your leak rate?

Post your charts.

It appears your therapy is treating your apnea well, and assuming your sleep isn't being disturbed by leaks the cause of your exhaustion is not apnea related and won't be solved by adjusting your therapy.

Mild apnea shouldn't send you to the ER and have you "blacking out randomly". You have something else going on.

Your AHI is under .5 and you are scoring 100? If it's like my machine, that means you're getting at least 6 hours of sleep. That's not as good as 8 but still should be enough to function. Even though you're slightly better since starting treatment, you are still experiencing fatigue so profound you cannot work or really exercise. This screams you need a full workup. Your thyroid, vitamin, etc. bloodwork may have just been basic. You might need an endocrinology deep-dive as well as cardiology and neurology workup.

Sounds like it's difficult to even get a GP much less in to see specialists but I hope you can soon. I know you're working on getting a medical professional, I think that's the right track and I hope they can get to the bottom of it.