I really like the idea of a system for sharing "N of 1" experiments on this website. That would be great. I think sleep apnea is an ideal condition in which to try this because: 1) it is a chronic condition that people live with for a long time, so we've got plenty of opportunity to try different things and see what helps, and 2) it is a physical problem (blockage of the airway), so there are lots of possibilities for "engineering" solutions that might improve the situation.
I hope your new sleep study results will provide useful insights. I would think that what would be most useful would be a sleep study with esophageal manometry, since that is the definitive way to diagnose UARS.
I have not tried a dental device because I have a bit of temporomandibular joint dysfunction (TMJ). It is not very bad, but it does cause me some significant pain sometimes. So my doctor thought it best not to manipulate my jaw, so as to avoid the risk of worsening that problem. I am inclined to keep trying with CPAP because, at this point, I have found solutions for so many of the CPAP problems I was having, I think I might be close to getting it all to work. I have an idea for a potential solution for the aerophagia problem that is now the main barrier to my success with CPAP, but it is going to take some time to try it out.
Hi Hope! Good to hear from you again. I, too, have been away from this forum for a long time, but just checked it again today and saw your note.
So, you still haven't been able to get a definitive diagnosis as to whether you have UARS? Maybe you should again contact the sleep doctor that you saw, point out that you are still having very problematic symptoms, and ask if the doctor can give you a definitive diagnosis as to whether, or not, you have UARS. I think that is what I would do, but another option is that you could consider planning a trip to Stanford to get a diagnosis. I hope that you eventually succeed at getting a clearer diagnosis.
I have made a lot of progress with my CPAP therapy, but I have not achieved therapeutic efficacy yet. So I am still living with daily fatigue and cognitive impairments. After much experimentation with many different masks and configurations, I did eventually find ways to solve all of the mask leak and mouth leak problems I was having, which felt like a huge breakthrough and accomplishment. Then I tried increasing the air pressure of my CPAP to see if I could find a pressure that is therapeutic for me. There is an air pressure above which the CPAP machine data indicates that I have fewer flow limitations, but I have little ability to tolerate that higher air pressure due to a different problem that it causes: I have found that at higher air pressures I get "aerophagia" and become painfully bloated. In other words, the CPAP machine pumps air into my stomach. So, that is the problem I am currently working on solving in order to progress with my CPAP therapy.
Hi Sidesleeper. If you are having trouble exhaling against the CPAP air pressure, maybe you should talk to your sleep doctor about changing the EPR setting of your CPAP machine or possibly switching to BiPAP. EPR is "expiratory pressure relief". This setting reduces the air pressure when you are exhaling by up to 3 cmH2O. I have not used BiPAP, but my understanding is that BiPAP can reduce the air pressure even more during exhalation.
One thing you can do to reduce how often your tongue falls down off the roof of your mouth, allowing air to get into the mouth, is to do tongue strengthening and training exercises during the day. Be sure that during the day your mouth is closed and your tongue is positioned against the roof of the mouth, all the way from front to back, as much of the time as possible, so as to train it to maintain this rest position. Strengthen the tongue by pressing it against the roof of the mouth and holding for several seconds before releasing. Repeat this 30 times, or so, each day with the tip of the tongue, the middle of the tongue, and the back of the tongue. A few weeks of doing these daily exercises should reduce how frequently you get air in your mouth, but with the caveat that it is rarely perfect due to the way that the muscles go mostly limp during REM sleep.
Yup, that is a common experience among us young, normal weight females with sleep apnea. One doctor that I saw concluded that I probably had depression simply on the basis of that I was reporting sleep difficulties and chronic fatigue. He didn't even ask what my moods were like before drawing that conclusion. At the time, I was one of the happiest and most enthusiastic people I knew, other than being a bit dissatisfied about my sleep problems and fatigue.