My doc had kinda just said I need to do my research to find a sleep specialist.
But I did, and in the meantime when I did my research I found this forum which told me how to adjust my pressures myself. I had put my minimum up to 10 which was only slightly better and got rid of the ramp time. I still get a stomach full of air. I can inhale great, no problem, even at lower pressures.
What I can't do in almost all comfortable positions is exhale. I can breathe in and out fine on my stomach with no machine (with my chin on a neck roll because I can't sleep with my head to the right or left because of spinal issues). But this gives me pressure sores on my lower lip and chin from pressing on my teeth and I can't stay in this position too long usually.
I did find a sleep specialist who seems very compassionate. He looked at my original script and said let's start with 9 and set it to CPAP not Autoset, but I had forgotten I'd already gone up to 10 minimum. He says the machine isn't reading that my palate is closing. I don't know why, unless I wake up so quickly that it doesn't have a chance to register.
Last night it started at pressure of 9 as he had them set it. Then I got so frustrated within 20 minutes of dozing off and waking up with my palate snapped shut, I switched it to 10. Then 11. Then 12. Then 13 which gave me about a 5% improvement so I fell asleep briefly. Or something like sleep. It was probably about 2 am by that time. I didn't sleep well after that (this goes without saying, been like that for years now) Tossing and turning and rearranging the hose and whatever else, making sure i can still breathe for at least a short nap. And finally about I think 6am I just took it off and laid there on my stomach with my chin pressed into the neck roll until about 730. I'm using 13 and classified as "mild apnea" and still not getting relief? Come on, what is wrong with this picture? The machine has stopped my snoring and that is a welcome relief but it hasn't really actually helped me sleep that much more and I've traded one form of sleeplessness for another.
Sometimes I'll wake feeling the palate closed (especially as it happens repeatedly when I'm falling asleep) and deliberately lay there NOT opening my palate for at least ten seconds to give something for the machine to notice. I don't know if it helps. It closes even if I'm still awake, in a reclined position, if i relax my throat. Happens even on my side most of the time. I can't sleep on my side long either because of my neck issues (those are being addressed gradually but that's also been a fight with my insurance). I have had better luck with that the last few days because I had a cortisone shot/C7 nerve root block but who knows how long that will last. It's already fading, I could tell last night.
I can demonstrate the closed palate simply by relaxing my throat when I'm awake and reclined even partially. Don't need a titration test for this. It sometimes does this even if I exhale too quickly while I'm upright. I find that I am automatically holding my throat open for exhalation even when awake like a singer opening their throat to sing (think of the sensation just before you yawn). But it obviously doesn't matter that much if it happens when I am awake.
So I woke up this morning and left a message for the sleep doc. I was bawling as I left it. So he just called me back and now I have to go for a titration test to see if they can figure it out. He said maybe a BiPap would be better. I told him I'm still trying to figure out how any amount of pressure is going to help me *exhale* if i have to *overcome the pressure* to exhale, I'm still going to flop that palate closed. And then I have pressure from the machine fighting against pressure from my lungs and the palate just stuck there in the middle at neutral. And the air goes down my stomach in the process if I don't open my mouth. It was already going down my esophagus I think at much lower pressures and it's highly uncomfortable.