SleepyMcgee wrote:
Question I should have asked first...does the data show that I 'have' sleep apnea?
That's a really good question and the cold hard truth of the matter is that from what I have seen here there isn't anything definitive that we can rely on to show for sure obstructive sleep apnea. We've got a maybe based on the machine showing lower AHIs with more pressure but we don't ever really know what the AHI was before it lowered.
The drawback to using the machine even at a minimum of 4 cm (with no ability to increase) is that the 4 cm pressure does have some therapeutic value despite it being relatively low. In other words if you did a night with the pressure at 4 cm and the AHI was still below 5.0 we don't know if the pressure gave us the AHI being nice and low or if nothing much happened to give us the low AHI.
If we saw a lot of movement from the minimum pressure upwards where we knew the machine sensed something it didn't like then we would have a more definitive answer. Like if your pressure went up to 9 and stayed there or went up there for a good part of the night.
These machines respond to snores, flow limitations, OAs and hyponeas (within whatever criteria they use) which either are warning signs (FLs and snores) or full blown obstructive events and if the machine doesn't respond we can't tell for sure why it didn't respond.
About the best we can do is give the machine a shot and see if it helps or not and since you say you do have some days where you see marked improvement then we sort of assume that something was going on and there was some help even if not consistent help. Obviously we want more consistent "good" nights because we like feeling better during the day and we want more of those days.
I have been wondering about UARS...Upper Airway Resistance Syndrome...in your situation. Now I am NOT saying that is what is going on here but your history and these reports does seem to make me want to at least think about UARS being a possibility.
Google it and read up on it. CPAP is still the first line of therapy but we are hindered a bit with UARS patients in that these machines don't really gather the data that we might find helpful in evaluating therapy.
To some extent the FLs and RERAs might help but there's no guarantee that they would.
UARS patients have to rely a lot more on how they feel than what they see on the reports because in all likelihood their AHI wasn't all that exciting in the first place. There is a specific test for UARS but it involves a sleep lab and some sort of device (PES) to actually measure things and if your insurance company won't pay for a regular sleep study then the chance of them paying for that type of sleep study would be similar to a snowball in hell's chance of survival.
Most of the time UARS diagnosis has come about more from a rule out situation...rule out typical OSA using standard measures and go with history and see what's left as a possible.
If I were in your shoes...and I had some good nights even if not as many as I wanted...and without cpap therapy I never had any good nights....then I would proceed with various trials in an effort to maximize the number of good nights which gave me good days no matter what the official diagnosis was. I wouldn't care so much about the name on the face as I cared about improving how I felt.
If (big IF I know) you do have some sort of UARS thing going on here from what I have read is that you may do better with a higher pressure...meaning higher than what is needed to get an acceptable AHI because AHI isn't a good yardstick for UARS patients. You would have to go more on how you felt than what you see on the reports.
Without having a conclusive sleep study showing X number of apnea events per hour we just don't know for sure what these AHIs you are having might really mean. It might be that in a lab setting your AHI wasn't all that high anyway. We just don't know.
But it doesn't stop you from trying to improve how you feel. I know it's frustrating having the occasional "good" night/day to tease you but at least you know it can get better. That's far better than someone who never gets a taste of "better"...IMHO.
So you keep trying things to see if you can zero in on anything to help improve the number of good nights.
You still have some options available and by no means have you yet exhausted all potential ideas in your search.