1 reply to this topic

[Ecograd]

Hi everyone -- I am brand new to this message board, and don't even know if I have Narcolepsy.

As some background, I am now 36 y.o. I had many, many hallucinations when waking up when I was in my 20's, less frequently sleep paralysis, one dramatic cataplexic episode. I have only two persistent symptoms: severe unexplained EDS, and my legs buckle out from under me whenever I laugh hard - But I don't collapse...is that still cataplexy??

My symptoms seemed to change when I got my first full-time 9 to 5 job. Fewer hallucinations, more day time drowsiness. I don't know what this means in terms of diagnosis. I used BiPap (for apparent central and obstructive apnea) for several months in 2006 but these did not reduce the EDS. A later sleep study (conducted after I had used Ambien CR consistently for two weeks) revealed no significant apnea. Now I take Ambien CR every night, so I sleep every night (between 6 and 9 hours) but I also feel crippling sleepiness all day.

Another thing that confuses me is the way I experience EDS. Since I have been around 17 or 18 y.o., I have experienced periods during the day when I felt like someone was flipping a "light switch" in my brain. Before the flip, I'm fine. After the flip, my eye lids are closing and I feel as if I've been drugged...I'm DROWSY drowsy drowsy, but I don't really feel tired. Does that make sense to anyone else? I also don't fall asleep against my will, but I have been sneaking out to my car to sleep for years until the drowsy feeling passes, which sounds like one of the recommended behavioral techniques for managing narcolepsy.

Can anyone provide insight? I have yet another consultation with a sleep center (at Princeton University Medical Center) on Jan 31. I think I might have narcolepsy, and in a strange way I'm afraid I will "fail" the MSLT and end up at another dead end.

Thanks...
Denise

[greatbig47]

Hi Denise!

What's the update?
How did your test go?

Don't give up hope! A lot of your symptoms sound too familiar to many people on this board.

Please let us know how you're doin!

-Stu