hi, pnp2004. i came across your post and couldn't believe what i was reading. you and i are like clones of each other!!! i am also a nurse with narcolepsy. i didn't find out until the summer of 2005...and that's after 9 years of being my own patient advocate & trying to convince the doctors something was truly wrong. all my problems started after i got sick with mono in july, '96. since then, i have never been the same. constantly tired, wanting to sleep all the time, memory issues.
during the 9 years i sought answers, i went to 3 different family physicians and a neurologist. the physicians all did the same thing every time i complained: they ordered lab tests to check my thyroid & iron levels. guess what? the results always came back wnl!!! each time they ordered those tests, i had to remind the docs that those levels had already been tested and ruled out as the cause. but who was i? one doctor even checked for lyme disease, rheumatoid arthritis, lupus, ms, etc. everything was wnl. so then they said it was depression. yeah, maybe i was depressed....because no one would listen to me or believe that something else could be going on!!! i agreed to try prozac, thinking maybe they're right even though, in my heart-of-hearts, i knew they weren't. and guess what? the prozac did nothing. finally i saw a neurologist who ordered a sleep study. this was back in 2002 or 2003. unfortunately my insurance at the time wouldn't pay for the study (because they did not feel there was enough medical necessity) and i couldn't afford the out-of-pocket cost. so i continued on struggling. it wasn't until after i got married in 2005 and switched insurances that i finally got the answer i knew was out there. instead of going back to the family physicians or neurologist, i went to a sleep disorder specialist who also ordered for me to have the sleep studies. man, what a relief when the insurance company approved them this time! i believe this doctor was thinking sleep apnea or rls. but when we read the results of the studies, he was just as shocked & surprised as me when it said i had full-blown narcolepsy. finally, after 9 years of knowing something was wrong but not having the answers or people who believed me, the weight was lifted off my shoulders. i was put on stimulant medication right away, but have not had much luck thus far. provigil did nothing and ritalin had min-mod, inconsistent results. some days it worked well, other days you couldn’t even tell i had taken it. so now i’m trying med #3 and crossing my fingers this one will work.
one of the worst parts of this ordeal: i actually had to drop out of nursing school in 2004 when i was in the middle of 2nd semester of the rn program. i was falling asleep during lectures, falling asleep at home trying to study, my grades took a dive, and i struggled to retain anything i read, heard, did, etc. it was very hard. but even now with the diagnosis and being on medication, i still haven't been able to finish an rn program yet. on the flip side, i did go back to school in january 2006 and successfully completed the lpn program, as well as passed my board exam. but, as much as i love being an lpn, it wasn’t my dream. and because of my narcolepsy and how bad it can get, i have had to accept that i may never be an rn.
anyways, thanks for letting me share my story. good luck to you and remember: there are others who understand and relate to what you're going thru. i wouldn't wish narcolepsy on anybody. and, as much as people can say "how can you be so tired?" or "you're just being lazy"...if only they could spend a day in our shoes. then they might think twice before making another comment. heck, what i would give just to feel "normal" again.