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I Always Thought This Was Normal.


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#1 iturnedintoamartian

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Posted 23 May 2013 - 11:48 PM

Is there anyone else that experiences very mild cataplexy that has always thought it was just normal? It seems the more I read, the more instances I can recall. Primarily, when I would/will get really upset, my face feels like it sags and I slur my speech and feel drugged. I am never standing up when something like that happens, so I have only noticed overall weakness, specifically with my face. But I always thought that everyone was like that? The only time I really noticed it, but never looked into it, was one occasion when I was working and suddenly felt like I had been drugged with a horse tranq. Luckily, I didn't fall, but I thought I would. I couldn't lift my head or arms, I felt like I couldn't even control my breathing (it was very shallow and I wanted to take a deep breath but couldn't). It seemed to take forever to dissipate though it was probably no more than one or two minutes. 

 

Sometimes I feel so stupid having thought all throughout growing up that this was normal. I always thought I was just a weak person because everyone else went through the same things and didn't complain. 



#2 tkozman

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Posted 24 May 2013 - 09:35 AM

i'm pretty sure you're normal, for a person with narcolepsy! ;->  once i was having a cataplexy attack [just head and neck] in my doctor's office and didn't even know it -- he had to say, 'there!  you're having cataplexy now!'  

 

please don't ever think you're weak, or lazy, or crazy.  we have a neurological sleep/wake disorder.



#3 sk8aplexy

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Posted 24 May 2013 - 09:57 AM

Three simple words of advice, 'Don't fight it'. 

It took me a while to figure that out, and I did after many episodes of collapsing while attempting to maintain my strength, resisting/fighting the episodes.

Doing such actually resulted in the 'longest and most fierce' Cataplexy episodes that I've had, I was somewhat nearly, or, convulsing, as I tried to fight/resist.

What I've learned is the best thing that I can do, is immediately lay down, as quickly as possible, in whichever way possible (usually awkwardly); such results (for me) in it dissipating very quickly.  Your bodies autonomic system should kick in and breathing should be shallow but controlled, by itself; as long as no injury takes place during the fall and your breathing is not affected by position, there should be no harm in Cataplexy occurrences (according to everything I've read and those docs who I've spoken with).

 

For years and years, I also thought of it as normal and was pretty surprised when it became clear that it was not, this was around 20 years old when I'd collapse gradually in front of my parents; I think I never even noted that weak episodes of drooping my head and/or slurring slightly were (or possibly had been) occurring, however as a kid I was very aware that I could not lift my arms to resist being tickled...

It was 28 when I knew it was time to seek help, after being in Mexico a couple of weeks with friends I was exhausted and expected it was finally going to possibly occur in front of my friends, that my ability to not collapse was likely.  I'd warned my good friend that if I collapsed oddly, to not worry, that I'd promptly be up.  He'd had the poo's for days and had not left the hotel, when he was making his first attempt of walking outside the hotel I was with him, we were crossing a street when suddenly he stopped and had a awful expression on his face; I managed to get to the other side of the street, then went immediately down.  I got up maybe 10-15 seconds later (that's the typical amount of time it takes me to re-strengthen or regain my muscles mostly) and laughed, then told him to go take care of himself.  Walked across the street to an internet cafe, googled 'laughter causing paralysis' and discovered the word Cataplexy.  It took a couple of years and a hell of a medical realm experience/s to finally first recognize as well as accept Narcolepsy (forum persons experiences helped the most) and eventually the dx was confirmed, yet as 'probable' due to strictness of the dx guidelines and oddities of my case/MSLT (gone into it all on these forums here and/or there)...

I skateboard still very occasionally, but up till around 30 I was skating multiple days a week, having minimal (non-collapsing) Cataplexy episodes one after the other, stepping off my board when need be or just drooping my head for a moment.  Street skating has been not of interest since we got a nice skatepark around 2004, being in a skatepark is a much more safe and somewhat controlled environment, not to mention falling/sliding down a transition of smooth concrete or wood, versus impacting rough concrete is huge...

 

Don't feel stupid on not recognizing, or regret it in any way, you are strong to live with it in the first place and is there really 'ever' any such, a, thing as, a, 'normal'(?)!



#4 Ferret

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Posted 12 June 2013 - 08:46 AM

Some days are diamonds, some days are rocks. Surrounding yourself with people who know what to do is empowering. What you don't need is the friend with the wicked sense of humour who thinks it's funny to have you collapse. Her record still stands at seven seizures in an hour. I was so tired after that I slept for 12 hours straight. Thank heavens she moved away.

A gentle touch or a hug "grounds" me and I come out of it more quickly. I will be forever grateful to a Mexican man who simply walked over to me and held my jaw closed with one hand and put his other hand on my shoulder. We can all do this if we see it happening to someone else. You do not need the "observer" to panic and start screaming for help...it makes it worse.

Be open with those close to you and tell them what you will need them to do. Empower yourself...and them.



#5 WitlessKim

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Posted 26 July 2013 - 11:30 PM

As a Freshman in HS I remember reading an article in a teen magazine about a girl with narcolepsy and a sign was that her knees would buckle and she'd collapse when she laughed. I thought "interesting, I do that too...but I doubt I have it." Fast forward 10 years of being called lazy for sleeping 12 hrs a day and I work for a sleep specialist who sees it happen at work and has me make an appointment.

I completely thought I was normal or just quirky. We called my mild cataplexy "feinting goat syndrome" until I found out what it really was. Good times, right?