Trying to help other people is difficult but not impossible. First, what kind of sleep doctor does your husband have? Also what kind of sleep study? If they were only testing for apnea, they could have missed a whole barrage of other stuff.
Was his head, legs and chest wired? If not, he needs a more comprehensive study. I am putting a link here to my favorite cpap tech on your tube. He will also try to help answer questions if you wish to pose them to him. In the meantime, continue to rattle cages and be persistent. freecpapadvice.com/ on the left side about half way down in the blue bars is a list of sleep disorders with links.
Check out the firbromyalgia and sleep apnea link. Interesting stuff. One last thought on the thrashing. Does your husband eat or drink late at night? He might sleep quieter if that is an issue and he cuts off food about three hours before bed.
I don't have a good answer for you. I just know what I would do. First, I would tell my husband that I am terrified for him because he could die of a heart attack. Secondly, I would find out if I had the right to discuss my husband's health with his doctor (he would have had to sign a privacy form allowing his spouse to talk to the doc) and if I had that, would call the office and ask for the doctor to call me. IF the doctor called back (and he'd better!), I would tell him/her my concerns and say I have sleep apnea and think my husband does, too. If the doctor tried to tell me that the study proved otherwise, I would tell the entire story about him sleeping so crazy the following day and that he said he never really fell asleep. The ball would be in the doctor's court at that point. If he or she has any compassion, the necessary tests will be ordered. Too many people are dying in their sleep (or lack of!) because of apnea. It has to stop.
So, I have been with my CPAP machine for a little over a month now and I have never felt better! Well, except for last week when I was sicker than I have been in a long time but that was a big exception. Other than that, I am amazed at the affect the machine has had on me... I have more energy, I am getting stuff done.... the list goes on and on. So, why am I frustrated??? It's my husband....
He went for a sleep study before I did but did not go into a deep enough sleep because he didn't know he was supposed to have a sleep aid. First let me say, we have been married for almost 20 years and he has so many sleep problems and has had them for years that I don't think a CPAP will fix all of them but I definitely think it would help. Well, for some reason the machines at the sleep study said he did fall deep enough asleep and they got an 87% reading or something so they won't recommend that he redo the study! And I told him he should tell his doctor that he DID NOT sleep during the study and see if her recommending that he needs to do it would make a difference. How do I know he didn't sleep during the study?? Because he came home and slept the whole next day -- sleep filled with nightmares, flailing around, and all around unrestful sleep but not something that we are not used to. I firmly believe that a good sleep study on him would reveal SOMETHING because he has trouble falling asleep, has muscle spasms or whatever when he does sleep, snores, wakes a lot during the night and can't go back to sleep, .... he has nearly every sleep problem you can think of. So what to do? He doesn't seem to think it is worth fighting with the doctor over (although he has said more than once that he wishes he could have a CPAP and could sleep at night!!!). He has a lot of other issues but I think this would be a good place to start in helping everything but how can I get him to confront the doctor to get another study? He obviously sees the positive experience it can be. We could pay for another study but it is like $2000 and we can't afford that.
Married for 19 years Mom of 2 girls, 16 yo and 9 Mom to three cats, Fudgy, Pinata, and Momo
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