Question
I was diagnosed with idiopathic hypersomnia 3 years ago (I was 19 and only sought help after falling asleep behind the wheel of a car- no one was hurt thankfully but the car was totalled). I've been taking Provigil(modafinil) and it has worked very well for me.
I do not have a severe form of the disorder. My question deals mainly with cataplexy. I've read a lot of information on it and everything I've read seems to say that cataplexy is linked to narcolepsy and NOT to idiopathic hypersomnia (IH). I was tested for narcolepsy partially because I've had cataplectic episodes, though again, nothing severe. I had one severe episode following a head injury (something that I read can aggravate cataplexy). I have noticed that I don't seem to fall down from laughing nearly as much as I used to. I do still fall down very easily when even slightly tipsy and laughing (do you know if any other people with cataplexy have this problem?).
I guess the first part of my question is if you know of any information I can get about cataplexy and IH as opposed to narcolepsy. If this connection is so rare, do you think its possible that I was mis-diagnosed? (my chart showed textbook normal sleep cycles and no REM during my naps, but that I did fall asleep - my naps during the test did not feel 'typical')
Also, I've always been annoyed at the 'wonderful' descriptivness of my diagnosis (unexplained exessive sleepiness) and was wondering if you know where I can find more/current information about what they think IH is or what causes it.
Thanks for any help
Answer
its funny because im diagnosed as narcoleptic with just one onset sleep rem in 1973 and all other testings normal cycles, yet my main complaint is cataplexy. from what ive read andwhat my physician tells me,he says hypersomnia is in opinion some other form or narcolepsy, and at times im more that than narcoleptic as my sleep attacks are controlled, but since i have a clinical case of cataplexy im considered narcoleptic. what you can do is go to search and punch in pubmed type in hypersomnia and cataplexy and see what papers were written up on it,also naps is another good website.also if your cataplexy is troublesome modafanil is for the sleepiness antidepressants like tofranil,prozac, and vivactil are for the cataplexy, what i would do is get a consultation at a sleep center and bring your studies with you and ask them, but as far as im concerned ,md might call me hypersomnic /narcoleptic cataplexy,narcolepsy is a form of hypersomnia.hope this helps,karel
