A great place to start Disorder information source Rated and Reviewed Sleep Links Entrance to all monitored Sleep Forums Search all of Sleepnet.com


Narcolepsy Forum
Posting


Archived Narcolepsy Forum20 viewing only. To post a new topic go to the Narcolepsy Forum Homepage.

Note to all

Posted by Been_there on September 20, 2002 at 22:32:13:

I'm a 55 yr old male diagnosed w/N at 21 though onset was at 14 or so. Accused through Hi school of being lazy, etc., as I couldn't stay awake. Cataplexy was serious issue while a teen as I was sure I was crazy or at least some kind of freak. Found out about N from a friend of a friend who's brother had had the condition. Once I knew the questions to ask (I had never connected the cataplexy and the sleep episodes, for example), it was only a matter of a few weeks before I had an EEG and was confirmed in October, 1969.
Those were Dark Ages as N was just emerging from being a psych condition to neurological. Will never forget the description a psychologist gave me of N which included the phrase "primarily among obese young males who are usually impotent!" Sort of a damming diagnosis for a 6'1" 180# males with a serious, sincere and lifelong interest in women! LOL!! (Fortunately as incorrect as the assumption that N is psychological in the first place! :-) )
The neurological side wasn't much better as N was then considered "petite mal" epilepsy. There is a conversation stopper for your next cocktail party.
6 months after diagnosis, I quit all meds for about 4 years.
I was a musician then and was known to have a few tequilas from time to time. I think they actually helped - alcohol inhibits REM sleep (the cause of DTs in real alcoholics) and may have helped me get real sleep. Cataplexy was still there so I avoided, as I have to this day, showing too much emotion. Except laughter- no problem seeing or hearing something funny, but if I say something funny, which I think I do quite often, there goes the weak knees and the head bob.
When my musician phase ended and I had to start working more than 4 hours a day, I found a good neurologist who put me on desoxyn and it worked pretty good. For the next 13 years I was able to work, even though occasional bouts of sleep and the inability to awaken in the morning kept me from any real advancement. Never bad enough to get fired, just bad enough to miss promotions.
In 1987 my state of residence began requiring the registration of users of amphetimines. This was a decade before they required registration of sex offenders. Unwilling to register, I discussed options with DR and quit my meds completely, cold turkey. The next 2/3 years were hell!
No one had told me I would be addicted, but I was. There isn't a day that passes that I don't think how great just one little pill would be, but I have never gone back and never will. Life is just TOO freaky on that stuff.
Still, without the meds, I would have had NO life. Good with the bad I guess.
I was married for 26 years, have one son, I drive and fly. Basically my parents and siblings, my ex and my son are about all who know about my N. The rest of the world is divided into two camps, those who just won't care and those who will see it as a weakness, a flaw. Better to leave them all in the dark.
Sorry for the length here, but I thought some of the new people might like to hear from a veteran of the N wars. A few closing comments and 1 (one) question and I'm outta here.
- I stayed on the same dosage of Desoxyn for all 13 years with no decrease in effectiveness. Dr said that Ns don't develop a tolerance to the right med. ???
- Surprised at number of females reporting the condition as it was so long considered a male problem.
- My Dr told me nearly 30 years ago that there was a good chance I would "outgrow" the condition and I have to a signifigant degree. There IS hope!!
- Am amazed at notes from med students with N. On their schedule, I'm sure I would have fallen asleep in my cadaver, meds or not.
???? My question??? I am interested in a postulate that smoking may be implicated. How many readers smoke and, among those who do, what was the relationship between starting smoking and the onset of symptoms??

Follow Ups:


Archived Narcolepsy Forum20 viewing only. To post a new topic go to the Narcolepsy Forum Homepage

  • IMPORTANT : Information not intended as medical advice. If you suspect that you have a sleep disorder you should seek care from a qualified professional. Read Terms of Use.
  • The Sleep Forums are not to be used for commercial purposes.
  • Commercial products and services are not endorsed by Sleepnet.com.
  • Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD.


Copyright ©1995-2005 Sleepnet.com., All rights reserved