Update:
So I found the right doctor. I found the best doctor and the best practice and got an appointment within 10 days.
We had a long 45 minute conversation and he listened to everything I said and wanted to know everything. I mentioned the sleepyhead/oscar. I don't think he's heard of it, but he wanted to see it! He told me things that no other doctors have said. He mentioned that it could have been something called
Ondine's curse. That word scared me but he said it wasn't a big deal.
Later that day we had another 30+ minute long conversation over the phone and he looked at all my ASV data.
This guy is a DO and not an MD. From what I understand, DO's are WAY better than MD's because they try to understand the big picture. Its like they actually give a damn unlike medical doctors who just wanna shove pills down your throat and push you out the door. I think DO's are the way to go because they stand a higher chance of actually listening to you.
Exactly 2 weeks later I did another home sleep study (#7 for those of you counting). Back to the traditional belt and cannula device. I only got 2 hours of rest and didn't have any problems though.
When I returned the device, I was asked if I was willing to see the doctor that same day. You're damn right I was. I took a walk and came back 1.5 hours later. This practice is great. I could never get in with the other place.
I sat down in some computer lab and he showed me everything. This is the way things should be! We had another 45 minute discussion. Again, can't say enough good things about this practice. This is a gentleman who takes pride in his job and is very interested in viewing the data and showing it to people. I feel like I hit the jackpot by finding this practice.
Long story short, I didn't really have any problems within those 2 hours. AHI was 3.
I'm still not convinced and think it should be done again. I mentioned how central apnea can be inconsistent, but he didn't seem to think anything of it.
I asked if the problem could be psychological and he said yes. A primary doctor prescribed a drug called Mirtazapine, and he said I should try that.
It looks like the problem is not sleep apnea and no machine will fix it.
What I think the problem might be:
I learned something new. When I wake up, my breathing is all screwed up and I feel what I imagine an asthma attack to feel like. I just can't get a satisfying amount of air in me and my lungs won't expand. I can remain like that indefinitely. But it I grab my phone and watch a quick video, or read something, within 2-3 minutes I start breathing right again. I can easily resort back to bad breathing again if I put down the phone AND start breathing different.
A mental distraction is the quickest and easiest way to fix my breathing. But if I'm just laying there idle, I have better success breathing when I start breathing slow and deliberate. Making sure to breathe all the way out before breathing in again and not breathing too fast. Deep breaths will then start to actually fill my lungs and it feels satisfying. But its like I can't "waste" my deep breaths. I have to breathe slow and shallow, and THEN a deep breath will eventually fill me up. Does my diaphram get tired after too many deep breaths and needs to rest up?
I wonder if I start chest breathing somehow instead of diaphram breathing. I am now able to (and learning to get better at) correct my breathing upon waking up and laying in bed. Still, this won't stop the bad breathing from happening in my sleep, and ASV seems to do NOTHING to correct it. Could the bad dreams be causing the breathing disruption instead of the other way around? Is it panicked breathing? Will Mirtazapine help? Will another drug help? Will one of those diaphragm pacing implants keep me regular?
This is truly a bizarre condition but I'm a lot further along in understanding what it actually happening, and hopefully solving the problem one day.
Edit: Oh, and why did that that previous WatchPAT sleep study show an AHI of 16 and a bit of cheyne stokes breathing? That was from my awkward awake breathing. The doctor probably just clicked print and didn't even look at it. I was able to tell this new doctor exactly when I was and wasn't sleeping when we went over the results together.
