Overall sleep stuff:
Most mornings I wake up feeling decent enough and without a headache. And the hand & foot pain that I had before starting PAPing almost 12 years ago is still absent.
I still have delayed sleep phase problems, but because of my job as a college professor, the fix for this is to just sleep when the body wants to sleep, which often (but not always) means going to be around 2:30 and getting up around 8:30. And on some nights I actually get sleepy as early as midnight or even 11:30 and on those nights I can go to bed and get to sleep in a reasonable amount of time.
The insomnia is mostly under control these days and without any sleep medication. By "mostly" under control, I mean that the nights where I am aware I'm not sleeping for long chunks after I go to bed correspond pretty closely to known stressers in my life. (The main one is my cousin who is currently living with us, but that's another whole different story.) But there are nights, usually when I'm under stress induced by the cousin, where I lie awake not sleeping for longer than I should, and yes, on those nights the BiPAP still manages to bother me.
The AHI is usually between 1 and 3. Sometimes it's higher for no good reason. Sometimes it's lower, but I can't really tell much difference in how I feel on an odd night with a "great" AHI of 1. 0 or lower and a "mediocre" one of 3.5 or higher.
I don't look at my data much anymore. Although I did look at it tonight before posting this, and I'm surprised that there is more taking my mask off stuff than I expected. (As a newbie, taking my mask off was not one of my many, many problems, possibly because I was getting so little sleep and I was literally afraid to take it off while I was actually awake and suffering from what seemed (to me) to be the world's worst case of aerophagia. Now I do know on some of the nights, the long times without a mask probably correspond to periods where I woke up hot and could not get back to sleep and the air blowing into my stomach was bothering me and I didn't want to get out of bed. But on some nights, I'm genuinely surprised by the times that the mask is/is not on.
Aerophagia had not been a problem for several years. But it's come back this summer. Not all every night, but enough of the time where it bugs me to lie in bed (NOT looking at the clock) knowing I'm not sleeping because my stomach is getting rock hard.
I'm still using the same old settings on my System One BiPAP: Min EPAP 4cm, Max IPAP 9cm, Variable PS range is 3-5cm. Yes, the 95% IPAP is almost always 9cm. The median IPAP is almost always less than 7.5. The 95% EPAP is seldom much above 4cm. Every time I changed these settings, it led to pretty bad aerophagia. So I've learned not to chase an AHI < 1.0 all the time.
I'm still alternating between the P10 and the Swift FX masks. While I like the weight of the P10 and the "no jet stream" exhaust flow, I have problems with the mesh getting clogged with water from the humidifier. And that will wake me up. My nose still wants lots of humidity, so the machine is currently set in "Classic 5" which seems to translate to "try to drown me" and my nose is happy enough. If I turn the humidifier down or switch to "Smart" mode (or whatever it's called), the nose can tolerate it for a week or so and then starts screaming about being dried out. The P10 headgear, minimal as it is, also gets tied up pretty bad in my curly hair and slips around more than I would like while at the same time the pillows themselves are not as comfy as the FX's are. The FX jet stream exhaust flow never gets blocked by humidity building up in it and through the years, I've learned ways to accommodate that jet stream exhaust flow. With ancient Pad-a-cheek covers for the silicon headgear, I like the way the headgear fits better when it's cold enough to wear fleece on my head. (Winters in Buffalo are nice for the FX.)
I am having real problems with migraines these days. And some of that is, alas, sleep related. So part of why I'm back is that I need to go through another round of climbing back on the horse and working hard to fix the sleep problems that are starting to emerge before they have a chance to become big, monster sleep problems that will require huge amounts of work to fix.
And a final couple of bits of info: I'm now officially without a sleep doctor since the one who was so helpful in finally getting me over the nasty set of problems I encountered starting up retired. And I'm also now officially without a DME since the one who sold me both my BiPAPs (and my husband's APAP) went out of business a couple of years ago. I did sign up for the recalls with the PR website back when the recall was first announced, but the last time I tried to check on an update, the site was complaining that we didn't have a DME and until we have a DME, it's not clear we'll even get on the recall list. So that's another thing to be done.
I'll write another update on what I've actually been doing with myself probably tomorrow.
It's good to be back.
