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How Does It Start?


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#1 Irishhh

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Posted 17 March 2009 - 11:43 AM

Do you remember how your cataplexy started? When you first noticed something wasn't right? I'm worried I'm developing it further. I have minor issues. Has anyone had this for a long time and noticed it getting worse? I know medication may mask some of this, but if anyone has any helpful info, I'd appreciate it! I can't seem to find anything on the development of cataplexy. My EDS and sleep paralysis has become worse over the years, so I assume it's possible for C to also do this??

#2 dogdreams

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Posted 17 March 2009 - 12:36 PM

Everyone's different, but mine started out slowly; some slurred speech here, a stumble there in my teenage years. Then when I was 19 I would fall down every time my boyfriend kissed me. But that's the only C I had that year. I had no idea why it would happen and eventually he'd get mad and say "stop playing that game!" I swore up and down I couldn't help it but he didn't believe me. lol Then when my N started getting really bad in my early 20's, the C happened more frequently and got worse and worse until I was falling down 20 times/day and could barely leave the house. At first I had only negative triggers like anger and fear, but then one day I was watching a comedy show and realized I couldn't move my arms and legs. That made me laugh harder and say "uh oh!" at the same time. I had been dreading that day but it turns out it wasn't as bad as I thought it would be. But it's gotten better since then, especially since I've found the triggers for the worst episodes. Now I can keep it to just a few seconds from laughing at jokes most of the time. Except for today...I'm having full-body C every few minutes and had to call in sick to work. Oh well! I'll just have to wait until it passes. Se la vie.

Not everyone develops such bad C and there's no way that I know of to tell if/when your C will get worse and how it will manifest itself. Sucks, huh?

#3 ulooktired

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Posted 01 May 2009 - 10:56 PM

QUOTE (Irishhh @ Mar 17 2009, 10:43 AM) <{POST_SNAPBACK}>
Do you remember how your cataplexy started? When you first noticed something wasn't right? I'm worried I'm developing it further. I have minor issues. Has anyone had this for a long time and noticed it getting worse? I know medication may mask some of this, but if anyone has any helpful info, I'd appreciate it! I can't seem to find anything on the development of cataplexy. My EDS and sleep paralysis has become worse over the years, so I assume it's possible for C to also do this??


Stress makes it worse, there's no doubt in my mind. Mine started 10 years ago.I would all of a sudden feel as if I was so weak that I absolutely had to lie down and i would find that i couldn't converse or do anything but lie there and shiver inside. Later I would feel it in my legs, they would go numb and feel very heavy and with this feeling the need to lie down and bury my head in a pillow or just hide somewhere. And, lots of other experiences. All this time not knowing what it was.
Try and make your life as stress-free as you can and take an anti-depressant like prozac. I hope this helps- I see it's an old post.

#4 drob

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Posted 19 November 2009 - 03:35 PM

In my experience it started gradually with worsening related to stress & tiredness.Posted Image drob

#5 hathor

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Posted 19 November 2009 - 04:31 PM

desccriptions of me from being a child say i have had it my whole life but it has gotten worse over the years. im so tired at the min so this is just a quick post. i had an attack in P.E. at school aged about 13 and one other big one when i was about 16 i was playing with the dog and had to back up and slid down the wall. i actually pee'd myself that time because i couldnt move to get to the toilet. after turning 20 it has got much worse to the point it happens everyday through alot of the day mainly just really bad face twitches but if im tired it will be the whole body twitch then sleep. it has definatley gotten worse and doesnt seem to be getting any better, but i have had it so long i dont let it bother me and still have quite a normal life.

#6 Bobbie

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Posted 21 January 2010 - 04:41 AM

<!--fonto:Book Antiqua--><span style="font-family:Book Antiqua"><!--/fonto-->Do you remember how your cataplexy started? When you first noticed something wasn't right? I'm worried I'm developing it further. I have minor issues. Has anyone had this for a long time and noticed it getting worse? I know medication may mask some of this, but if anyone has any helpful info, I'd appreciate it! I can't seem to find anything on the development of cataplexy. My EDS and sleep paralysis has become worse over the years, so I assume it's possible for C to also do this??<!--fontc--></span><!--/fontc-->

I have had Narcolepsy/Cataplexy all of my life (67years old). As a child, I didn't have sleep attacks, I simply couldn't stay awake if I was inactive, tried to read a book or do homework. Cataplexy was the most recognizable symptom which started when I was 13 whenever I laughed. Then came sleep paralysis and h.hallucinations. Sleep attacks came after my first child and worsened with my next two children. The Cataplexy has been severe and the worse to deal with. I finally found a doctor knowledgeable enough to put me on Anafranil which has suppressed most of my Cataplexy and allowed me to be more normal for the first time in my life. I also have Central Sleep Apnea and have to sleep with a C-pap and an oxygen machine. It does nothing for my sleepiness during the day but it will prevent my heart from enlarging. The development of Cataplexy is definitely different for everyone. From the knowledge I have acquired over the years, You can have Narcolepsy without Cataplexy but you can't have Cataplexy without Narcolepsy. I hope I have helped you in some way.