Narcolepsy and Sleep Disorders

[aander2]

Hi! I was dx'd with Narcolepsy 2 years ago after years of c/o fatigue, daytime sleepiness, falling asleep at inconvenience times. For years I was told it was depression (I do have a mood disorder although this is tricky b/c narcolepsy causes energy swings through the day and extreme strong emotion so can this be a true dx when narcolepsy is something you can dx with specific criteria from sleep study-more difficult with mood disorder diagnosing), then chronic fatigue, the list goes on. Finally, I met an MD who took me very seriously and sent me to a neurologist for eval. After the sleep studies, I was diagnosed. I have been on provigil (made me feel ill), ritalin (no effect except elevated BP and irritability), the ritalin patch (daytrana) patch doses are too low, would have to wear several, again no effect, currently on adderall with some effect. I work a .7, pm shifts. I have had only 1 pt with narcolepsy and no peers, friends, family. Wondering if there are any nurses out there with the same struggle? How do you cope? What meds have worked for you? Are you able to work? My neurologist suggested working 4 hours in the am then nap for 1hr then work 3-4 hours in the afternoon. Sounds nice but I reminded him I am a nurse and this would be impossible. HELP!

[Laurie T]

I was Dx'd with Narcolepsy 3 weeks ago. I am on Provigil and the Sleepmed Xyrem. This treatment combination has transformed my life. I feel good all day, every day. The 2 meds work together, and after 7 years of suffering I feel completely normal