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Quality Of Life With Narcolepsy

by Mike
(Riverside, Ohio)


I'm a 55 year old male and was diagnosed with Narcolepsy at about 45 although I can now put 2 and 2 together and realize I've had some symptoms since high school. I've had 2 polys with MSLTs. My 1st test showed REM, the 2nd did not but my symptoms are unmistakable so I am still being "treated" for Narcolepsy.

I have no cataplexsy as yet. I'm on Adderall 30mg 3 times daily and Nuvigil 200mg 1 time daily. Most days I still sleep away or have attacks. While I was living in Colo. my Dr. asked me to try Desoxyn 10mgs 3 times daily and I became as "normal" as can be expected. I even went back to work as an electrician. My co. changed ins. plans and guess what wasn't covered any longer? So back to Adderall and Nuvigil and disability.

I have now moved to Ohio and found a very respected sleep doc that I like very much but he will not write me for Desoxyn. (I can afford it now that SS has kicked in) He sent me to another Dr who of course tested me again, confirmed the diagnoses and refused my plea for Desoxyn saying "it is no good for my brain?" This is a world renown Dr. and that's the best he can do??!!!

I can't drive any distance. I nod out and slam my head on my desk or key board. I nod out and fall off the toilet. I smoke so I've left burn holes in about every rug and piece of furniture in the house. (I now smoke outside) I was sitting here at my desk with a bowl of fruit cocktail when attacks came on and I kept landing my face in the bowl. (lol...You can laugh.) My wife finally saw me and replaced the bowl with a soft towel.

My attacks consist of me nodding out for 2 or 3 secs in which I dream and come out of it acting out my dream. I may have as many as 20 in a row. I don't have the ability during the episodes to just get up and lay down in bed. I'm too out of it.

I know that Desoxyn is just about black listed but I think the doctors should think more about my quality of life than scrutiny from the FDA. AM I wrong? Am I missing something?


Comments for Quality Of Life With Narcolepsy

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Jun 19, 2012
Desoxyn for narcolepsy
by: Anonymous

I totally agree. There's no cure as of yet, so all we can do is find a medication(s) that help us lead a normal & productive life. I was prescribed desoxyn after the adderall wasn't working. The adderall made me jittery, but I still had episodes. With desoxyn, I am awake & alert without feeling jittery. I can understand why it's highly addictive, however, they make it because it works for people with medical conditions who need it. Its not dirty &extremely strong like the street drug- nothing like that (so I've been told). Narcolepsy is debilitating, & if you've ever known or been around someone who suffers from this disorder, then you know how difficult day to day life can be- without the right medication. Until there is a cure, we deserve the same quality of life that people without narcolepsy have, & if desoxyn works, then I don't see any reason why we shouldnt take it. The benefits outweigh the side effects.

Oct 22, 2012
Desoxyn broke
by: Anonymous

I currently take Desoxyn for Narcolepsy and it works great but I have no insurance and I have to get only a two weeks supply at a time because I can't afford a whole month. I am scared I won't be able to get it one day and that will be really bad because nothing else worked for me.

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