I am new to this forum and I am hoping someone else has similar issues, and more importantly, a solution. I was diagnosed with sleep apnea several months ago when I began seeing a pulmonolgist about a mass in my right lung. It is important to note that I also have a somewhat rare auto-immune disease called Sjogren's (show-grins) in which my body attacks its own moisture producing cells. As a result, I have extremely dry eyes and sinuses. Anyone else out there with Sjogren's that uses or has tried CPAP or BIPAP?

When I was tested for the CPAP machine I woke up in 2 hours with one of the worst sinus headaches I have ever had. It took days for it to go away. Once I got my machine home the same thing happened everytime I tried to use it. Very bad headaches and I would wake up with my sinuses completely closed and no air getting in. All of the suggestions that were made (sinus spray, sinus rinse, increasing humidity in CPAP) all made my sinuses even drier. The Ear, Nose & Throat doctor found no abnormalities other than the extreme dryness caused by the Sjogren's. He said the forced air is making my sinuses swell closed. The next step was to try the BIPAP machine. I do not get a headache with the BIPAP, but my eustachian tubes in my ears become completely blocked. The last time I used the BIPAP was 5 days ago now and my left ear is still totally blocked and no matter what I do nothing is clearing it up. Also, the doctor explained to me that the tests showed the BIPAP is making me stop breathing in my sleep. A rare occurance, but it does happen sometimes that the brain thinks it doesn't have to breathe because the machine is doing it for you. His wants me to keep trying it and see if my brain "gets used to it." So basically, I have a condition where I stop breathing in my sleep and the treatment is to use a machine that makes me stop breathing in my sleep? I don't get it.

My dilemma is: My doctors keep saying I need to keep using the BIPAP no matter what, but I cannot see how it is ever going to work for me and I honestly think it is making my breathing problems worse. I have no problem with the mask and it is not because I can't get used to it. I wish it would work and I could get one of those good night sleeps my friends with machines say they get. How long do I keep trying different things that I know are not going to work before I should just throw in the towel? I am more miserable using the machine and it is affecting my daily life, including work, not to mention the cost. Are there some people who simply cannot use CPAP or BIPAP and how do I know if I am one of these people?