Narcolepsy Support Group

Hi,

I was recently told I most likely (I don't have the funds to do the sleep/wake tests right now) have narcolepsy.

I was also told that many people with narcolepsy have sleep paralysis, so I thought someone could help shed some light on my experiences.

During sleep paralysis on several occasions, I have felt an overwhelming and chaotic fast shaking sensation. Sometimes it is simultanous with blinking lights, tingling skin, and a loud "wind-like" sound. It seems almost seizure-like, although I have never had daytime seizures, and when I wake up from the paralysis I seem fine.

What in the world is going on? I appreciate any insight anyone can provide.

Hi

I have had that same experience since teenager i am not 37. for many years dr. thought i was imagining it but there seems to be more information out and about now. I have had some dr.s i told in passing who know about it but seemed unconcerned , I did have to see a neurologist once for something unrelated but mentioned it to her. She said as long as my potassium levels are fine that its nothing to worry about. Which they are. It seems to happen mostly if i over sleep or go back to sleep once i am awake.

But i have almost always had it with tingling and wind sound I also get pain in my jaw which must be me clenching my teeth or something. It kind of hurts and when i wake up i feel fatique. but that being said its been happening for so many years without harm so that makes me less afraid of them for serious injury but they pretty much suck.

if you get in a normal sleep pattern they do happen less often.

your the first person i have read that has it the way that i do most of the articles i have read insist that you don't feel anything uhm i wish that were the case.

My eyes can also open and i can see my surrounding.

btw i do NOT have narcolepsy never had any symptoms nor problems, testing etc. I did read once every narcaleptic has sleep paralysis but not everyone who has SP has N.

sp is like being trapped in a glass cube. you think you are seeing and hearing and shaking and fighting to get out or in this case wake up from being trapped where you don't want to be, but there is always those 4 glass walls holding you in, until you over power it and break free,it happen to me,in small enclosed places or strange unfimilar places,or when i am around a group of people, like a car or hotel room or church for example. i think it happen because ,i worry about my surrounding, i need to feel comfortable with them to get a good rest on, even if it's just a quick nap, otherwise it's just a quick trip to paranoid land and to the cube i go. i think i developed it when i was a kid and i worried what people would think if they caught me sleeping in an odd place,when i was trying to hide my narc from them. don't hide anthing anymore and it doesen't happen very offten.

what u have described sounds alot like hypnopopic and hypnogogic hallucinations. they occur as u fall asleep and as u wake up...they are both symptoms of narcolepsy. do u by any chance have spuradic muscle weekness of loss of muscle composer when your emotions are running high? if so this would be called cataplexy. this is another symptom of narcolepsy.

i also have hypnogogic hallucinations and cataplexy and autonomic behavior and dream terrors and osa and a partridge in a pear tree, (lori partridge)little joke for us oldtimmers.

The dream terrors are the worst...I just had one the other night I thought was sooo real it scared the crap out of me. When I finally woke up I didnt want to go back to sleep.

Hi all, its been awhile. As I was catching up I ran across you all talking about dream, hallucination and dream terrors. I am not sure about the dream terrors but REM sleep is very bad for me, and of course anyone in the house with me. I scream, cry (badly, it scares everyone), move, jerk, and so on. This year I broke my arm. Try tell that to the ER doc...um, I'm not sure how I broke my arm..duh I was asleep. That doc thought I was on drugs of course (most do in my case). In the past I have given myself black eyes, knots on my head, and burns(from my radiators).

Lately my newest stage is the hallucinations. I have known I have always had them but never really put a name to them. Hallucinations I thought were always scary images. But mine were usually audible and sometime visual, but mostly of common things and sounds like my phone or my name and the most annoying, whistling. My hallucinations are getting worse now and by worse I mean more often and the more tired I am the worse the images are. Bugs, people, but I can often tell that they are hallucinations so they dont bother me.

Anyway just thought I would share this in hopes of maybe hearing more about others dreams and such of this matter. It is kinda interesting to hear and share.

<3 Becky

I have hallucinations and vivid visions in my mind of violence, I cant even explain what they are like. Its very confusing to me. They happen when I close my eyes. I have voices in my head that arent my own its kind of like racing thoughts but they are like conversations. Its creepy. I dont have multiple personaity disorder or anything its just chit chatter in my brain. I have never been very open about this except to my husband and psychiatrist so I am kindo of putting myself out here...but maybe it will help someone else going through it. There are meds for this like Geodon, Abilify, Haldol and Invega. I just havent found the right one for myself.

Post edited by: MissStacey, at: 04/18/2009 06:27

mkst-

How odd. I also have the clenching jaw. There has to be a reason.. It's not a coincidence that we have the tingling, wind noise, clenching jaw during sp. What a mystery.

You are right about the sleep pattern. I usually have more of a problem with inconsistant sleep habits.

Thanks for the response.

MKST,

What do you do for the clenching of your teeth? I must do something similar because I bite my tongue. When I wake up my tongue is bleeding and swollen and my jaw is really sore.

Becky