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Cataplexy Reflexes?


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#1 Eraizaa

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Posted 01 October 2012 - 03:26 PM

Hello! New here and all.

I wanted to know if any of this happens to anyone else:

1-For the first few months that I started having Cataplexy attacks, I would usually fall hard or fall on someone. Still, I was lucky enough to not have been hurt by it or hurt anyone in the process. However, after some time, I noticed that my body kind of developed reflexes to adjust to Cataplexy. Whenever a Cataplexy attack would start, in a split second, my feet would suddenly turn on their own (like a reflex) moving my body into a safer falling position. That happened plenty of times, but it's not all.

2-Often, when I have a Cataplexy attack without any possible safe way to fall, it feels like my body is fighting against the Cataplexy itself. Cataplexy always wins, but, the attacks are often be delayed enough to fall safely. Unfortunately, that does come with a price as the whole "delaying an attack" causes me to feel like a painful burning electricity is running through my body. Not fun at all.

3-This last one is rather new. I think it only started happening this year. Rarely, during some attacks, just before they happen, some part of my body becomes completely stiff. When the attack happens like a split second later and I fall, that stiffness saved me from something. I can recall two occasions. One, I was just walking around a second floor of a building and was about to take the stairs down. Suddenly, my left arm jerked towards the handrail and my left grabbed on to it and didn't let go. Right then I had an attack and the rest of my body went down, except for my left hand which refused to let go of the handrail, but that actually saved me. Still, even after the attack was over, it took some time for my left hand to let go. The other event, I was at the hospital because the doctor wanted to do a long term EEG just in case, and when I went into the bathroom, I had an attack. Just then, my head dropped forward and my neck stiffened. When I fell, the back of my head was inches away from an edge. So, again, that saved my life, but even though I was in the middle of an attack and couldn't move, my neck stayed stiff until a bit after the attack was over.


Anyone has any experiences like these?

#2 Guest_tabster1_*

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Posted 01 October 2012 - 10:23 PM

Hello! New here and all.

I wanted to know if any of this happens to anyone else:

1-For the first few months that I started having Cataplexy attacks, I would usually fall hard or fall on someone. Still, I was lucky enough to not have been hurt by it or hurt anyone in the process. However, after some time, I noticed that my body kind of developed reflexes to adjust to Cataplexy. Whenever a Cataplexy attack would start, in a split second, my feet would suddenly turn on their own (like a reflex) moving my body into a safer falling position. That happened plenty of times, but it's not all.

2-Often, when I have a Cataplexy attack without any possible safe way to fall, it feels like my body is fighting against the Cataplexy itself. Cataplexy always wins, but, the attacks are often be delayed enough to fall safely. Unfortunately, that does come with a price as the whole "delaying an attack" causes me to feel like a painful burning electricity is running through my body. Not fun at all.

3-This last one is rather new. I think it only started happening this year. Rarely, during some attacks, just before they happen, some part of my body becomes completely stiff. When the attack happens like a split second later and I fall, that stiffness saved me from something. I can recall two occasions. One, I was just walking around a second floor of a building and was about to take the stairs down. Suddenly, my left arm jerked towards the handrail and my left grabbed on to it and didn't let go. Right then I had an attack and the rest of my body went down, except for my left hand which refused to let go of the handrail, but that actually saved me. Still, even after the attack was over, it took some time for my left hand to let go. The other event, I was at the hospital because the doctor wanted to do a long term EEG just in case, and when I went into the bathroom, I had an attack. Just then, my head dropped forward and my neck stiffened. When I fell, the back of my head was inches away from an edge. So, again, that saved my life, but even though I was in the middle of an attack and couldn't move, my neck stayed stiff until a bit after the attack was over.


Anyone has any experiences like these?


One time I fell out of my chair but protected my head with my arms as I fell. Time does seem to slow down or something when it happens to me...it's more gradual and kind of in jerks than all at once. I think the more I try to fight it the worse the whole thing is when it hits. I think mine doesn't affect my entire body most of the time.

Maybe it's not hitting your whole body at once?

#3 Hank

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Posted 02 October 2012 - 08:59 PM

First of all- glad you didn't get hurt. I have had a few interesting ones- I have lived with this undiagnosed for so long, I apparently just did not look for an explanation- I just accepted that things happen to me that I could not explain.


My worst Cataplexy accident:

24 yrs old- climbing a remote peak in North Cascades, WA. I was with a climbing group of about 8. On our descent, we were glissading (sliding on our butts) down a snow field. I had an ice axe held at my right side with both hands and a 75 lb pack. It was really thrilling (key word) and I tilted to my right side. I saw my face hit the snow, then my eyes shut so I could not see. I felt like I was in a clothes dryer while I just tumble.

I tumbled about 200 feet until I skidded to a stop. When I could move, I signaled that I was ok. My climbing partners thought I fell because I was dead. I was trained in glacier rescue and knew how to self arrest (stop myself in a fall), but I did nothing to stop myself and had no explanation- I just didn't know why.

It is amazing to me that I did not break a bone and my ice axe did not injure me. I just badly sprained my shoulder.


Last year, I was in-line skating with my son and his friend. I had just finished a 5 mile run and my legs are often wobbly after a run. My son's friend needed some help, and when I put my break on, my legs just gave out and I fell backward. I broke my elbow. Still never made the connection.

It is amazing to me that these quirks I've just lived with for so long have a name- Cataplexy- who knew.

#4 DeathRabbit

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Posted 03 October 2012 - 09:26 AM

I only get partial cataplexies, but i have found I can minimize or stave off an attack by concentrating really hard on something. Doesn't matter what, so usually I just try to focus on what I'm doing currently to the exclusion of all else. I'm guessing the concentration promotes beta waves in the brain, staving off those annoying theta waves that screw with us so badly.

#5 Guest_tabster1_*

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Posted 07 October 2012 - 09:54 AM

Is your whole body going stiff? Like when you were holding the hand rail, was the rest of your body stiff too?

#6 Eraizaa

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Posted 07 October 2012 - 10:02 PM

I only get partial cataplexies, but i have found I can minimize or stave off an attack by concentrating really hard on something. Doesn't matter what, so usually I just try to focus on what I'm doing currently to the exclusion of all else. I'm guessing the concentration promotes beta waves in the brain, staving off those annoying theta waves that screw with us so badly.


That would make complete sense of many of my situations. Mainly the example #2 when I mention that "delay" on attacks.


Is your whole body going stiff? Like when you were holding the hand rail, was the rest of your body stiff too?



No, when that happened, only my hand went stiff. The rest of my body was hanging down motionless having lost all muscle tone like in any other cataplexy attack. I'm starting to believe my body just found a weird way to adjust or something...I don't really know.

#7 sleepyk

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Posted 28 October 2012 - 11:15 PM

I also find that concentrating hard on the task pushes me through cataplexy. I have also developed over time, out of necessity, to quickly turn off my emotions. Somehow I have always known that I have to be "sober" to function. I focus on turning off emotions, then focus on my task. Only time it doesn't work is when I am too tired to keep focused.

#8 sk8aplexy

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Posted 18 January 2013 - 01:14 AM

sleepyk, yes, I'm with you there. perhaps? -may go on, and on, a bit here...-

 

I call, and/or think of, such being 'non-emotive.'

That represents for me, being balanced and grounded.

Basically focused entirely on my core, the physical, while counting and/or slowly breathing; entirely relaxing the mind and body.

Being within reach of this 'non-emotive' place is a crucial thing for me; in some sense, it is a sort of safety netting.?

As Cataplexy was just an odd thing occurring to me from when I was very young when my arms would go paralyzed while I was being tickled (yet no one would hear/d, nor was/have been able to comprehend or believe that it was actually occurring).

This 'non-emotive' place or exercise, appeared from years of adjusting to it all (including other health matters), however I could; and this was in my 20's with the collapsing Cataplexy, that it appeared...

 

I'll say this: 'Skateboarding could not have prepared me more, nor better, for Cataplexy.'

Flickering Cataplexy after landing a trick, or someone hollering, or just while over-exerting myself; in pools at skateparks for many years now is sure sketchy, at times.

Got to release the inner-stresses somehow, though.

Knowing that when Cataplexy hits, that reaching/going 'non-emotive' and/or if need be, perhaps sprawling myself out on the ground as though Cataplexy would perhaps; really helps to dissipate the Cataplexy, ASAP. That is, from the sort of odd freeze up Cataplexy, where you are somewhat resisting/fighting it, frozen till it dissipates or intensifies.

Only once, on a 4' mini ramp did I pretty much collapse up near the coping, from Cataplexy; sliding down the transition harmlessly, thankfully.

Of course, there are times that reaching that 'non-emotive' place doesn't occur until I'm awkwardly sprawled out, then I come to the 'non-emotive' place; dissipating the Cataplexy.

For instance, watching Parks & Rec or something really funny, you can't control the remote nor your body, but the ____ keeps going and laughing continues.
I recommend, 'not eating' when watching something that makes you Cataplexy; that is if your Cataplexy causes collapse or sliding/falling from seat...



#9 MissRae

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Posted 19 January 2013 - 02:38 PM

For me, it's hard to tell when the Cataplexy actually happens. It's been fairly new for me, and really it's been developing more and more. The biggest triggers for me with the cataplexy are:

 

1. Trying to focus on something when it's hard too (ADD) and therefore getting frustrated.

2. Laughing really hard, which for me usually happens when I'm really happy, shocked, or being tickled. 

 

 Mine isn't as strong but normally consists of me dropping things, tripping while walking, focusing my vision, speaking clearly, my stomach muscles tensing while my leg muscles relax (mostly laughing,) laughing even harder than I normally would at something (maybe not cataplexy, but complicates it) and even at times trouble breathing (feels like an asthma attack...)

 

I've noticed though that as the Cataplexy develops, so has my reaction to it. I'll find myself looking for a place to sit, or just squatting. For example, while on vacation last week my boyfriend and I got into an elevator which had some issues; the lights went out, it dropped a little bit before coming back on and safely returning to the ground floor. As soon as the doors opened I quickly exited and started laughing ( a normal reaction for me to have to something scary...) Of course, this triggered the Cataplexy and so there I was, sitting on the bottom part of this pillar holding my stomach and giggling my butt off... yup.

 

With walking, I can catch myself before tripping... like when going down stairs, I'll stop, stare at my feet a moment then kinda feel for each step before going down. (It doesn't help that my meds make me dizzy...)

 

It does worry me though that it seems to be developing more and more. Hopefully I'll just keep learning how to adapt to it. 



#10 exanimo

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Posted 03 March 2013 - 05:27 AM

I also mostly get partial cataplexies. The most common is weakness in my neck and upper extremities, sometimes my knees. I usually will automatically notice the weakness and I guess I am concentrating it being in a specific spot (like my neck, so my head falls to my chest or I do a head roll/lol type thing). I think that by concentrating on thinking the cataplexy is only in one place, it may localize it to that area. But IDK. I'd never really thought about it until I read this post. But I am definitely concentrating on it being a specific weakness in a particular area.