I can relate to your feelings on CPAP. I have a love-hate relationship with my apap as well, but I have grown to consider it a life-line of sorts. Without using it, I really don't have a life because being tired all the time isn't really living life to the fullest. I'm still looking for a full-face mask that will fit my small face that doesn't require constant vigilance and non-movement to keep it sealed. In the mean time, I have found a partial solution in making a nasal mask work to keep me going using cpap. There have been a lot of improvements in cpaps and masks since I was diagnosed and I am hopeful that I will eventually find the "perfect" combination or something better may come along:)
If you were diabetic, would you only have your blood sugar tested once a year by a professional, or would you monitor and make adjustments as needed? If you are lucky, you will meet your assigned specialist and he/she will become someone you know how to reach via email. In reality, the only time you will have your card "read" by someone is a technician when and if you make an appointment to try on a new mask once a year. If I didn't check my numbers every morning, I wouldn't know that my auto titrate pressure stays steady between 10.9 and 11.4 and I can guess my AHI by how bad I feel in the morning. Would I rather be in the dark? No.
I find that whenever I am breaking in a new mask, it is like breaking in a new pair of running shoes. I always get a pressure sore on the bridge of my nose if I don't protect the area for the first two weeks. I wear a small piece of gentle medical tape over the area that normally develops a pressure sore. Within a couple of weeks, the mask becomes more accommodating to my face and I don't have to use the tape. It totally prevents the indentation and sore on the nose. My skin is really sensitive and this works for me. If the tape is hard to remove, remove some of the adhesive by touching it with your fingers before putting it on your nose. The tape doesn't interfere with the seal of the mask either if you use just enough to cover the area that has a problem.
How about some studies for people who are CPAP-compliant or trying to be CPAP-compliant? It seems like researchers are only interested in improving the lives of people who refuse to use CPAP. I am a Kaiser Northern CA customer. With Kaiser Permanente being so prevalent in California, I would think that Kaiser would be researching and recruiting patients into their own studies, yet I don't see this happening. I would like to see some of the non-profit insurance carriers work together on research that benefits everyone with sleep disorders. Thanks for the opportunity to comment.