The following is a visitor-submitted question or story. For more, you can submit your own sleep story here, or browse the collection of experiences and questions other visitors have shared here.
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?
Mike
Enjoy this page? Please help us pay it forward to others who would find it valuable by Liking, Sharing, Tweeting, Stumbling, and/or Voting below.
Subscribe To Our RSS Feed
Like This Page? Share It!
|
| |
|
|
Site Sponsors
Our sponsorship policy
Lowest CPAP Prices. World Wide shipping. 866-939-3754.
A Note On Visitor-Submitted Questions:
Publishing sleep stories and questions from our visitors is meant to create a forum for open and proactive dialogue about an extremely important portion of our lives (one that occupies 1/3 of it and affects the other 2/3). It is not meant to substitute a trip to the doctor or the advice of a specialist. It's good to talk; it is not good to avoid consulting someone who's profession it is to help you with this kind of stuff.
If you are in any way concerned about your sleep health, don't wait for an answer on here, and don't necessarily rely on them. See a sleep specialist in your area as soon as possible.
Sleep Resources
Ready to take your sleep game to the next level?
Zeo - Personal Sleep CoachPro-grade personal sleep data
Who We Are
Welcome! This site is continuously being created by students of Dr. William C. Dement's Sleep And Dreams course at Stanford University.
Hover your mouse over this area for more about this site and its mission.
Or, you can learn more about the team behind EYSD here.
Please Note:
The information found on this page and throughout this site is intended for general information purposes only. While it may prove useful and empowering, it is NOT intended as a substitute for the expertise and judgments of healthcare practitioners.
For more info, see our
Terms of Use.