Discussions By Condition: Sleep disorders

Narcolepsy(??) treatments no longer working!!

Posted In: Sleep disorders 0 Replies
  • Posted By: FixMEdoc
  • March 29, 2010
  • 01:34 AM

My EDS (Excesice Daytime Sleepiness) symptoms started about 14yrs ago, when I was about 16. In 2005 after sleep study, the sleep specialist informed me that he'd be treating me for narcolepsy. Provigil didn't work at all & I was started on 20mg of Adderall XR. Between Sept 2005 & Aug 2006 my dose was increased to 80mg Amphetamine Salts per day, though it's ability to keep me "functional" has always been on the decline.

I tried dextroamphetamine for 1 month last year, and it seemed to be a little more efficient, but I couldn't afford to keep taking it to see how it might effect me long-term.


Before my diagnosis & even up until the past couple of years, I'd always been very driven by a high level of personal motivation. I'd wake in the morning(or after a nap) thinking about things that I could achieve, and it gave me an elevated feeling that carried me along, as I would go about my awake time being as productive as possible, despite the frustrations of the constant sleepiness that always wieghed on me.

It is rare I ever muster the motivation to take care of even my own needs & I seem to feel more exhausted in moments that I feel I SHOULD be feeling the excitement of something "good" or "exciting" I'm about to do.


My brother(who is 6 1/2 yrs my junior, at 24) suffers from identical symptoms, so of course we work together in our plight for "the answer". He was changed to Vyvanc(?sp) several months back when the Adderall had basically "stopped working" for him & also tried Xyrem a couple of months back.

We've experimented w/ as many combinations of herbal rememdies, lifestyle/dietary changes & drugs we've been able to thus far & well, I could've typed this a long time ago, but I rarely manage to find the motivation to even look for answers anymore. I have layed around playing mindless games on my phone & computer until meeting the point where I felt enough like putting this effort into opening a door where there maybe a shred of possibility it might generate whatever miracle we're awaiting, since ya know, I'm still alive & all.

I AM, at least, an extremely appreciative person, and would be infinitely grateful for any effort put towards brainstorming our quarry &/or sharing w/e anyone feels may be useful in bringing us closer to answers/solutions.

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