Arlene1963 wrote:
There is a time and place to hang in there, but you have not been diagnosed with OSA and until you get an official UARS diagnosis my recommendation would be to just stop XPAP and work on getting a proper diagnosis, UARS or not. As I understand this you were hoping that it would help and you have your answer so until someone diagnoses UARS or you feel better pretty soon, why continue?
Actually he did get a night recently where he didn't use the machine because of mask issues and frustrations.
Abandoned after about an hour of mask fiddling.
He told me he woke up feeling like crap...worse than usual and with a headache, etc.
I had to chuckle a bit because one of the things I was wanting him to eventually do after using xpap for a period of time was to not use it and see what happens. It just happened on its own a little sooner than I anticipated.
xpap is helping but not as quickly or as markedly as he had hoped. He's not got the greatest supply of patience in the world and he is the first to admit it. We talk about it quite often. He was hoping to see marked relief after 6 weeks and I was thinking we would be lucky if he saw a small change after 6 months.
I have seen his sleep study reports and something is trashing his sleep quality...lots of arousals both respiratory related and spontaneous and even a handful of limb movement related. If he doesn't have UARs I would be very surprised. It's pretty much classic but the other arousals aren't breathing related so while we can help smooth out the breathing related stuff we can't fix the spontaneous arousals.
What we are hoping is that by fixing the breathing related arousals that it brings down the total number of arousals to a point where he doesn't feel like crap and have to accept that until the cause of the spontaneous arousals can be found and fixed that his sleep is not going to be perfect or anywhere near perfect.
He's like most people...putting all his eggs in one basket and wanting xpap to fix all the problems and it can't.
He and I have had this discussion many, many times.
He comes here and is really just ventilating his frustrations. I understand that. He needs to do that.
The reason we are working on the leak situation so much is because we can't evaluate the breathing quality overall and especially the remaining evidence of arousal breathing when the leaks are in large numbers because we don't know if the arousal breathing we see with the leaks would be there without the leaks and it's the arousal breathing we are watching. The leaks themselves aren't really that big of a deal in his situation if they weren't disrupting wife's sleep. It's not like he has to maintain a critical pressure to hold the airway open like OSA people need. And most of his leaks are below 35 L/min anyway. The actual time spent in really, really big leak is relatively small.
Overall his number of arousals have reduced quite a bit. So some progress has been made. His asleep breathing flow rate has improved slowly but it isn't where he wants it to be.
He now knows that he feels worse without therapy...so it is helping.
His AHI which is 99% SWJ is slowly dropping which is a backwards way of knowing that the arousals are slowly dropping.
He has multiple issues going on messing with his sleep quality. Part of it is very likely UARS as evidence by the respiratory related arousals on his sleep study. Part of it, and a significant part, are the spontaneous arousals which outnumbered the respiratory arousals and we can't fix those with xpap because they aren't related to breathing problems.
His use of the word "disaster"...just his frustrations and lack of patience coming out. He's wanting to dump all his problems in the UARS basket and expect xpap to fix them and fix them quickly. Even if UARS was 100% of his problem xpap doesn't fix it quickly in most people and especially with UARS it often takes months and months to see improvement.
And we know for sure that a substantial part of his sleep issues aren't related to UARS (assuming that is what is going on) at all.