Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I experience sleep attacks and cataplexy, and meet all diagnostic criteria for narcolepsy except for early-onset REM (which was absent on my MSLT).
My doctor nonetheless stated that while he believes I have narcolepsy, he was required to write idiopathic hypersomnia as my official diagnosis, due to the REM issue. He explained that due to the fact I take an anti-depressant (Zoloft), my REM was suppressed. Consequently, my insurance, Independence Blue Cross/Blue Shield, was unwilling to cover the modifinal that my doctor prescribed stating that its use for idiopathic hypersomnia is "experimental." My sleep specialist went through two rounds of peer-to-peer reviews and my modifinal was STILL denied. Afterward, I filed an appeal and the denial of coverage was upheld. I am at a loss for what to do. I contacted Teva but they don't offer financial assistance for modifinal. Does anyone have recommendations for how to proceed? I could do a second MSLT off of Zoloft, but I have bad anxiety/depression and I can't afford to go back to the way I was before I started on Zoloft - not being able to work, and experiencing frequent panic attacks. Not to mention the fact I still owe $3,000 from my last MSLT (my insurance made me pay a third of the cost out of pocket). Paying for a second MSLT is out of the question right now. Any suggestions you have are greatly appreciated.
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I have a possible new diagnosis to discuss with my therapist tomorrow. It might be the answer to a question that I have had since I was 19. It's called Rejection Sensitivity Dysphoria (RSD). It happens to a large percentage of people with ADHD, which I have. Actually, I have been watching videos about ADD/ADHD lately. I remember my Mom telling me that she watched a show on ADD and she...
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Hello- I am new to the group
I don't have valid suggestions, beyond talking about it loud and often enough for our voices to be heard, but I wanted to offer support and empathy. It is a frustrating phenom.