Narcolepsy Forum Posting

Posted by jennibean2 on November 22, 2004 at 11:37:51:

I found this forum a couple weeks ago and have many questions and have been viewing the archives. I suppose I am not even officially diagnosed except that from my symptoms my Dr feels there is no question. I however have asked for a sleep study anyway. He gave me provigil which I found worked really well the first 5 days or so but have since stopped taking it because I found it was making me VERY aggitated and short with my children and I was still so tired anyway. The thing with me is that most people would never guess I had this, I over compensate so much for my complete fatigue that I never stop moving in the day trying to avoid a sleep attack. When I do stop though I feel if I don't take a nap now I may die. Here are my symptoms and I am wondering if anybody has anything similair.
First I have sleep paralysis I can remember the first time it occured I was about 13 and it scared the crap out of me, I now know why some people think they have been ubducted by aliens as that was my first thought at the time. It has progressively gotten worse and more frequent over the last 3 years or so. I am now 33. I have major hallucinations upon falling asleep, always scary of course but I am learning to try and control them and turn them into Lucid dreams and am becoming successful. The two things I am wondering about though are these.
1) When this is happening my jaw has started shaking uncontrollably, back and forth very rapidly, I have compared it to feeling like someone has a jack hammer on my brain. Does anyone else have this? Is this cataplexy? It doesn't happen if I am awake, really it has twice. The second thing is the fact that I feel I am floating around the room. It is so real. It scared me at first and when it would start I would feel as if I was trying to pull myself back down on the bed, Now I have learned to become less scared and practice spinning around the room like summer saults in the air. LOL I have to laugh because when I tell my friends or husband this stuff they look at me as if I am CRAZY!!! I was thinking I was too until I was told this was all part of narcolepsy. I have been telling Dr's for years that I think I am more tired than most people. They diagnosed me at 23 with chronic fatigue syndrome. I never really told them about my weird sleep experiences until now though. I can function well if I keep moving but still sometimes it becomes overwhelming. I can not watch TV in the morning or at night without falling right to sleep sitting up. I never new this was narcolepsy, I pictured narcolepsy as just falling down instantly, not dozing off. Now I know that is cataplexy. I am wondering if all of this is getting worse with age will I eventually develop more cataplexy? Anyway am glad to find all of you. I have never met anybody who coudl relate to all of this. The paralysis, the hallucinations...Last night peopel were walking around in the attic getting ready to come get us and I coudl hear it so clearly, I kept trying to wake enough to prove to myself that the sounds were not really there but you know how tired you feel when trying to come out of this state? If I can manage to get up I can make it stop otherwise I start to fall right back to sleep and the hallucination for that night continue before I even fall asleep again. It is so bizarre to me and now that I am learning more about it I almost look forward to it, to learning to control it at least. I find it very challenging. I am glad to be here and so sorry that I went on for so long.

Jennifer

Follow Ups:

• Re: Newly diagnosed so many questions Mary 13:22 11/22/04 (2)
  • Re: Newly diagnosed so many questions sleepydreamer 14:29 11/24/04 (1)
    • Re: Newly diagnosed so many questions Sleepy in LV, NV 14:38 12/08/04 (0)

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