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I'm Not Cataplectic


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#1 maggie

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Posted 09 February 2009 - 07:46 PM

I do not have cataplexy, just excessive daytime sleepiness. What I want to know is... do I fall asleep and not know it? I don't think I do or have ever just konked out. I am on Adderall 30mg twice a day and Xyrem at night. I had a MWT and did not fall asleep at all during any of the four studies. I know the literature says that some people with Narcolepsy may become drowsy or feel foggy at unusual times.....even while driving. Those last three words make it difficult for some narcoleptics to have a life. I mean some people only have EDS and are in control with meds as I am and still can't drive a bus. I think it's an over-reaction because "the outside world" doesn't understand this condition and feel that when they hear the word Narcolepsy they freak out, to them it means you will all of a sudden nod off in your soup. Do narcoleptics fall asleep and not knoe they've done it???

#2 chimbakka

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Posted 10 February 2009 - 09:40 AM

QUOTE (maggie @ Feb 9 2009, 05:46 PM) <{POST_SNAPBACK}>
I do not have cataplexy, just excessive daytime sleepiness. What I want to know is... do I fall asleep and not know it? I don't think I do or have ever just konked out. I am on Adderall 30mg twice a day and Xyrem at night. I had a MWT and did not fall asleep at all during any of the four studies. I know the literature says that some people with Narcolepsy may become drowsy or feel foggy at unusual times.....even while driving. Those last three words make it difficult for some narcoleptics to have a life. I mean some people only have EDS and are in control with meds as I am and still can't drive a bus. I think it's an over-reaction because "the outside world" doesn't understand this condition and feel that when they hear the word Narcolepsy they freak out, to them it means you will all of a sudden nod off in your soup. Do narcoleptics fall asleep and not knoe they've done it???


yup. microsleeps. i'll "daze off" for about 1-2 seconds, sometimes a split second. i can feel when i do it. but you can't always see it, unless you know me and know what to look for. like your mind flicks the lights really quick, but your body is still up and about or doing whatever. autonomic behaviour i think is also kind of falling into stage one sleep, but im not 100% sure. i get sleep drunk sometimes and my dr describes it as my sleep one stage falling into my wakefullness, basically half aware im sleeping but awake sleep walking. i can move and do basic human things but nothign more, look like a zombie, stumble about and talk like im drunk. BUT if i, say, follow someone around at the grocery store and keep my damn mouth shut and just focus on the person im following and don't get distracted by the shiny lable on this or what the hell is that.. .five min later oh its soup... kind of thing i look half normal just "worn out". as long as no one asks me complicated questions like where is the milk or what is my name.

#3 Henry G

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Posted 10 February 2009 - 11:14 AM

I shouldn't scare you

Sometimes Cataplexy still develop after the onset of N.

That according to a doctor, he told me that, he said there is a huge chance I will still develop Cataplexy in the next 5 years. But that was 6 years ago!

I replied if that happens I will stab my legs or electrocute myself. Rewire the nervous system.

I mean seriously, N is already damn bad and I haven't had a chance to develop any experience with C. Can't afford it now.

So C would be absolutely intolerable now and if my body wants to misbehave - I will punish for it. Become a reclusive monk in the Himalayas or something.

I really need spooks, frights, strong emotions like anger - or intense laughter etc - I use my reflex reaction to get out of my N at times. It is my defense mechanism + fight mechanism.

If someone gives me a fright unexpectedly I never jump - but face the person in a fighting pose. That is the reflex.

When I am overly N - I watch an intense thriller or something overly funny. I might even do something very daring that would make normal people feel petrified.

Having said that I do have an inkling of C. But it happens differently - when I get depression my lips quiver.

#4 eightlegs

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Posted 10 February 2009 - 01:59 PM

I'm pretty sure I do this... though I've never had the wakefulness test. When I worked 9-5 I would get lost driving home... 2-3 times a week... I was always too embarrassed to admit it, so I'd make up a million excuses as to why I was home late... and there was always unexpected "traffic".. unsure.gif I'll stop to do something, and lose time.. sometimes I can spend 20-30 minutes brushing my teeth, looking for a pair of socks, I've spent an hour packing a diaper bag... I'll get the "what's taking you so long" from my frustrated husband.. and honestly.. I dunno..

I notice when my meds are working well this doesn't happen. I have a much clearer concept of time.. and I don't get lost going to places I go everyday.. so I think I do nod off without really knowing it.

#5 eww

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Posted 11 February 2009 - 12:27 AM

Apparently once while my mother was visiting me, I got up in the middle of the night and spent 3 hours in the washroom looking at... something. I don't remember exactly. But I hopped up onto the sink counter by the mirror and sat there for hours. I remember waking up, using the washroom, washing my hands and hopping onto the counter to look at something. Then I remember hopping down and going back to bed. According to my mother I was in the washroom for hours and the majority of the time was spent sitting on the counter staring into space. blink.gif

She likes to claim I'm just so enamored of myself that I regularly look at myself in the mirror for hours at night.


Plus, during my MSLT I didn't think I had fallen asleep at all. I did. Every nap.

#6 loki

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Posted 11 February 2009 - 08:35 AM

Yes I do fall asleep and not know it. I figure it out because I realize I've missed things even though I was right there or I lose sync in a conversation or in a lecture or watching TV.

#7 2muchcoffee

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Posted 12 February 2009 - 03:26 AM

I get the microsleeps all the time. Usually, when I know I should go for a nap but want to stay up for just a bit longer. And, I think, only when I'm sitting down already pretty relaxed (watching tv, computer, reading, drawing, etc.- I guess there have been a few conversations as well...) Sounds a little petty, but it drives me crazy when I'm watching a show and all of a sudden I'm at the end I don't recognize half the story and the whole thing doesn't make sense!