[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.

[Tonya36]

Providgil has never worked for me! The only two drugs that "helped" were Adderall and Dexedrine! Nightime meds I'm on is 2 restorils capsules or 2 trazadone tabs along with 1 ambien. When ambien first came out, especially the ambien xr it worked awesomally well but now Nothing!

[LynnA]

Hi Tonya,
Provigil never worked for me either. My neurologist finally broke down and proscribed Adderall XR for me. I have been taking this drug since October 2009 and now I feel normal. I very rarely fall asleep in the daytime -- this drug really helps.
Anyway, take care and good luck. Lynn A

[Tonya36]

It makes me feel happy to see someone can "feel normal"! Maybe at some point I was feeling that way when I was first started on adderall and/or dexedrine but now I'm still always so tired throughout the day. My doctor switched me back to the reg. adderall and I feel pretty normal when I take it (keeps me about 70% awake and functionable) But it is so short lived. I can only take up to 8omg a day(the parmacist doesn't even want me to take that much unless the doctor signs off on "being responsible for me because it is so much!) Nevertheless, I force myself to have a normal life for the sake of my beautiful little "full of life" little angel (she's one). So I'm working at an awesome group home with an awesome supportive staff and an even more awesome boss! (only part time I feel that's all I can handle but my supervisor said the head people will look into making me full time because we are short handed) I'm scared to death because not only I'm I half way functionable throughout most of the shift but my memeory is fading(all my doctors said that's normal with narcolespy!) However,for the sake of my daughter if they ask me to do it I'm going to try!
TAKE CARE! SORRY I'M LONG WINDED ! JUST NEVER MET ANYONE WHO COULD RELATE TO ME!