Narcolepsy

[hutson]

I have had narcolepsy since 1991 associated with the hallucinations. To add to it, I also have sleep apnea. I get very frustrated with taking the medicine at night and then having to take medicine during the day. I still remain tired during the day. I have asked my neurologist if there are any new medicines that can help treat these issues and it still has come down to the same medicine. I take Imipramine at nighttime and Provigil during the day. If I didn't have access to Provigil, I would not be able to afford it.

[Petrea]

I also have narcolepsy and sleep apnea. After my last sleep study, the dr. said my sleep apnea was pretty much under control with the CPAP but that the narcolepsy was still fouling me up. I still have sleep attacks all day long and have been on social security disability because of this. I am on Ritalin 10 mg, 12/day and Ritalin LA 20 mg, 2/night plus Vivactil 5 mg 4/night, and Provigil, 3/night. (My mom takes her Provigil during the day but mine is at night, don't know why the difference.) My mom also takes the impramine at night instead of the vivactil. I don't know if the vivactil would help you or not, but it wouldn't hurt to ask. I know one thing, you can't ever "catch up" on your sleep to feel better, it just doesn't work that way! Also, do you miss out on TV programs, movies, reading a good book, going to church, etc., because of the sleep attacks? Just wondering, I don't know anyone other than my mother that has narcolepsy. Thanks.

[LynnA]

Hi Petrea,
I currently take methylphendidate ER 60mgs and it isn't working -- I sleep at least twelve hours a night and when I wake up, I still feel groggy and very sleepy. I'm waiting for my Neurologist to switch me to Adderall XR. I need to get back my life, my life when I felt normal. I''m tired of being tired and falling asleep when it's not appropriate. Take care.
LynnA.