This is my first post here, although I'm not new to CPAP therapy. It's not exactly been a smooth road for me, hence my username, problemchild. I apologize for the long post.
I was originally diagnosed with obstructive apnea in 2011. They started me out on a Fisher Paykel CPAP machine with humidifier. I believe my original pressure was 10. I had trouble with masks. My mouth seemed to come open, but full face masks never seemed to fit the contours of my face. I spent several years with nasal pillows, with a mask to cover my mouth. Even then, I had trouble with leaks or with my nostrils eventually stretching out over time to leak. Also, the mouth part of the mask mashed into my teeth/gums, which was uncomfortable.
In 2013, I had a followup sleep study, but the only change was the recommendation of a chin strap to help keep my mouth closed. Part of the challenge of keeping my mouth closed is that I wear an NTI bite guard over my front teeth to keep me from grinding my teeth at night. The NTI guard allows me to keep my lips closed, but it's a head start on opening my mouth.
I used a chin strap for about a year, but it really wasn't helping with my mouth, so I quit using it. Eventually, I switched to the full face mask that I've used ever since.
For six years, I used the Fisher Paykel CPAP machine, but I was still having problems with extreme sleepiness during the day and trouble with feeling rested after sleeping at night.
I had major back surgery in January and during my three-day stay in the hospital, under the effects of anesthesia and pain meds, I was having non-stop problems keeping my O2 levels up. They even had a nurse watch my O2 levels one night, while on my Fisher Paykel CPAP. I improved enough to go home, but the doctors and nurses said I probably needed a new sleep study. They suspected I might be edging toward central apnea, or complex, at least.
I had that sleep study a couple months ago. The study showed little sign of central/complex apnea, but moderate obstructive. They titrated me up to a pressure of 14. As a result, I got a new CPAP machine, the Resmed Airsense 10.
Unlike my old machine the Airsense has mobile access, which means that for the first time in six years, I have a machine that can record what's happening at home while I'm sleeping. They started me at a static pressure of 14, with humidity. Once again, I started seeing problems.
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From the start, on 5/31, I haven't had an AHI less than 8.6. Most have been 12 or higher. When multipled times the number of hours I slept, I've been averaging almost 100 events a night. OA's and HA's are the bulk, but I've had some nights with significant clear airway (CA) events (where I apparently am not breathing, but not obstructed. My Airsense was recording a lot of leaks, as well, but I wasn't sure when they were happening.
The resperatory therapist at the supply company was monitoring my progress and was concerned at the AHI levels and number of events I was having. She talked with my pulmonologist and he agreed to move me to autoset pressure, with a range of 14-20. The thought was that I might need higher pressure to address the obstructions.
The past five days of autoset pressure has seen my AHI numbers, and total number of events, spike. I've been 12-15 AHI, but multiplied out to the number of hours I was sleeping, I've been having 120-140 events per night.
One night, my mouth had come open (but the mask wasn't leaking yet), and it was loud enough to wake my wife up. She watched me not breathing for a long time before waking me up and telling me to breath. This, on my CPAP, with the pressure ramped up to almost the max.
I downloaded Sleepyhead and started reviewing my events against the times when I was aware of having issues. What I saw was pretty scary.
Last night, I had a six minute frame of time of OA's that added up to three minutes of not breathing (spread across four or five events) and bracketed by two 10-second HA's. One OA was over 90 seconds and two were over 60 seconds. My flow rate was almost pegged at 20. And a leak followed that, suggesting (to my uneducated mind) that the apneas are increasing the mask pressure until it blows my mouth open, drops my jaw, deforms my cheeks, or blows out the cushion on my mask to create a leak.
If you get the impression that I don't think I'm getting the proper CPAP therapy, you're spot on.
My frustration is that, upon telling my pulmonologist about my concerns, and upon his reviewing all my events, he opted to believe, not the stats returned from my Airsense and my personal experiences, but the sleep study that (apparently) had not observed the same level of events. He told me to "ignore" the AHI and has set my Airsense to a lower base autoset range. Tonight, I'm going to have a 12-20 range, but I can't say I'm convinced it's going to be different from what I've seen.
I've read a lot of comment threads out here, but I've not seen any describing the same kinds of issues I'm having.
I understand that you're not (necessarily) medical professionals, but I'd like to get some other perspectives on what's happening and, perhaps, some suggestions of things I can try. Thanks, everyone, for whatever help you can provide!