Welcome. You have a complicated situation. Sort of like a tire pressure monitoring system on your car reporting you have low pressure BUT when you measure the air pressure in each tire it gives you different readings. How are you supposed to know how much air to add? The lack of deep sleep is obviously a big factor in your daytime tiredness as is the poor blood oxygen. A medical professional will have to determine if you have UARS but your symptoms seem to indicate that might be an issue. The compounding of your medical situation with the other issues certainly means that you will have to dig further to find therapy that eases the drowsiness and low blood O2 saturation problems. Keep talking to your doctor (PCP) and sleep doctor and perhaps further sleep study testing can get a more consistent picture of where you are.
Wiredgeorge. Thanks for the response. I have a few really weird medical situations going on. I might have actually had a blood clot at the time of that first test. I was having a lot of issues and even failed a lung function test with low FEV1 and low DLCO. Since then my FEV1 has went back up to 75 percent of predicted. I don't know if my DLCO is still low though. I'm really struggling with BIPAP compliance. My max pressure setting is 24. Once the machine completely ramps up, I start to choke, or massive amounts of air begin leaking from my face mask. I have the Mirage Quattro full face mask. I was in the hospital for a week when I had the large blood clots in my lungs, but they had me on 02 24/7, so it made my low oxygen not show up. I noticed that I felt much better with the constant 02. I also have diabetes and the Hughes Syndrome, both of those are known for causing headaches. But when my blood sugar is normal (under tight control) and my blood is thinned properly, I attribute the headaches to the sleep apnea and low oxygen levels. Last night I had the mask on for 2 hours. I had an AHI of 9.9. I don't know if the events happened before my pressure level was in full force, or if they happened because of the pressure level. In my last sleep study they wrapped something around my head to help keep the mask on, and they fixed all of my events with a max pressure of 24. I have the ResMed Air Curve 10 ST. It's the last machine they have before they put you onto ASV. There is also some talk about neuromuscular problems; but my restrictive lung pattern is not validated, because I have an elevated TLC. I added that just in case one of the doc's pops in and can offer up any advice. When I finally pushed for a sleep study, about 7 months ago, I was choking myself awake many times a night. I was literally choking within minutes of trying to fall asleep. I was having severe anxiety and insomnia because I was afraid to fall asleep at night. I felt like if I would breathe too deep, I would get air hunger. Then if I would breathe too shallow, I would also get air hunger. I sometimes catch myself not wanting to take a breath after exhaling. It's like I just stay there holding my breath. Any how, thanks for the support.
There are so many issues here that I once again think it is time to make your doc(s) earn their keep. I can't say much except there are only three reasons a mask will leak like your mask does:
A sign of leaking through the mouth is that your water reservoir goes dry very quickly regardless of the level it is set to. I don't much care if mine is on or off now and leave it on 3 setting. If I fill it, it has enough water in the reservoir for 3 or 4 nights and I honestly can't tell a difference if is is on or off. My pressure setting is 25/21 on the same machine and I have the ramp set to 5 minutes and could easily turn it off as I am asleep by the end of the 5 minutes. I enjoy high pressure as it allows me to breathe easily through my nose where without therapy, my nose is stuffed a lot. Pressure keeps it open and I think this may be the thin bridge of the nose as the cause.
Anyway, as far as the medical issues compounding the problems you have, I can't speak to that but as for the mask leak, well, I think I have come along way in this regard and can same something helpful. Don't be afraid to try another mask and learn how to keep that jaw from dropping!