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Cataplexy With No Trigger


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#21 slo.mo.a.go.go

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Posted 14 May 2013 - 09:41 PM

Thanks for the input. Hope she doesn't find out but it is helpful for me to have a bigger survey size. As rolling the hay is the only time I've experienced cat-like symptoms at the level that scared me. The falling plus the face slacking to where I couldn't say "help i'm falling." I just really struggle with validating those feelings and symptoms.

My boyfriend is luckily someone who needs more sleep than the average folk. So more time together on my turf. But also I'm jealous, too of his ability to feel better after sleeping or taking a nap. 



#22 Andrew

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Posted 12 June 2013 - 01:36 PM

You are most definitely not alone.  It even has a name:  orgasmolepsy, or the presentation of cataplexy during orgasm.  It happens to me, to varying degrees... sometimes barely or not at all, and sometimes it's like my full-on normal C.

 

It's very noticeable when you're... how to put this tactfully... by yourself.

 

As far as the thread topic, for me, I am pretty sure my C always has triggers.  The worst is anger.  And its presentation is interesting.  It's not the thing that makes me angry that does it, it's me expressing my anger.  The more intense the expression of anger, the rougher the C attack.  Example of mild:

 

Child leaves backpack in the middle of the kitchen floor.  Did it last week too.  I call child into the kitchen, and if I let myself get mildly angry while lecturing I'll get a little droopy (non-intense, maybe half a second C, sometimes the kid notices).  Have to be stern but CALM.

 

Example of bad:

 

God damn dachsund eats another shoe, half of a brand new pair, we're easily over $1000 into this little fetish of his.  I scoop up the f****er and yell at him as I am escorting him outside and I have to stop and lean against the wall or fall over.  Or get in an argument with GF over something and feel really angry/passionate about a response I am making.  Arms fall to sides, speech slurs, knees start to buckle, need to lean on something.  If I force myself to be calm it stops, but if I try to maintain it (the anger), then I'm fighting against the C and losing.

 

I do try to fight against it.  Feel it coming on and try to retain control of my muscles.  It's not very successful.  When fighting it, the best analog I could give is that I feel like a gear missing every tooth but one.  So I try to fight it and I can't; the gear is just slipping, but then it grips for a fraction of a second, which manifests as a sort of twitch, but then I have no muscles again.

 

I do think that some days I am more prone to C than others, and, if this makes sense... I can sort of feel it waiting in the back of my head/neck.  Maybe that sounds weird.  But I can say that if I have C happen today it will be of middling intensity.  I think the intensity is linked to how well I slept the night before.

 

For me, cataplexy is not muscle weakness.  It's muscle absence.  It's as if the affected muscles are just not in my body anymore and I start to fold.  It's getting worse too.  I hate it so much.

 

Other, milder triggers are funny things - it's got to make me belly laugh and then I experience it mildly - orgasms as mentioned above - anticipation and then realization of something exciting - like standing at the edge of a doorway to scare my friend and then scaring him and C'ing as we laugh about it, mildly.  Making an unanticipated witty comment that people laugh at does it a little bit too.  I do a lot of public speaking and if I am in that zone, I can be funny and off the cuff and there is no problem.  It's when I am, say, sitting in a class for training at work and something funny pops into my head and I say it and people laugh - get C then.

 

Such a crazy crazy thing.



#23 Ferret

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Posted 12 June 2013 - 09:05 PM

I get "that" feeling/sensation in the back of the head too...in the area just where your skull joins the spinal column. I know it's gonna be a bad day while waiting for the inevitable to happen. My C always has triggers...laughter(mirth),sadness,anger,fear (like being startled by a firecracker going off or a sharp crack of thunder). Once the C has happened, the sensation goes away and I feel immensely better.
Never had an attack after orgasm...perhaps because mornings are best for me and that's when we usually do it.

#24 ikon0304

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Posted 14 June 2013 - 01:40 PM

my C attacks are bad with my emotions.   my boyfriend had me laughing so hard that i had an attack.  anger...oh jeez..dont get me started with that one.  My anger gets me in trouble with my C every time.  and with it comes a seizure.  was just in hospital theother nite because i had fallen from a C attack the night before and my head didnt clear up..got to the hospital and had two C attacks and seizures right in a row.  found out i did have a concusssion and i have degenerative arthritis in my neck because of the seizures causing me to have whiplash...



#25 DeathRabbit

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Posted 14 June 2013 - 01:54 PM

Do you think it's possible the head trauma could have caused the brain damage require for N? Also, have you tried lamictal. I've had some help with N symptoms and I've got an epileptic friend who is on it, and since then she's only had one petit mal seizure.



#26 ikon0304

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Posted 16 June 2013 - 02:24 PM

i've been  on lamictal for over ten years, at the top amount possible. finally am getting doc to take me off it since it isnt doing anything for me anymore.   not sure what we will try next. good luck with it..hope it works!



#27 Krickett

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Posted 18 June 2013 - 03:05 PM

Thanks for the fast replies everyone! To answer your question exanimo: I had literally JUST woken up. I think I got about 8 or 9 hours of sleep and I can usually function pretty well on that.

The stress thing explains alot. I never experienced severe cataplexy until I came to this school and started getting freaked out by the people and the classes. Before then it was just a mild weak "feeling". I actually think I was starting to cause them for a bit because the more I worried about having an attack the more attacks I would have. Like a weird anxiety cataplexy cycle.

Although it could be something that was just going to happen anyway as I now fall over when I laugh and that never happened. Being suddenly surprised doesn't trigger it at all though, but getting really nervous or angry does. I don't really understand it.

Good to know that people have it from general stress/social anxiety though.

I have the same problem!! I was beginning to think for a while that maybe the cataplexy part of my diagnoses may have been a mistake.. but i too suffer from agoraphobia ( afraid to go places because im so anxious about my anxiety it causes panic atacks) and i also have more of a cataplexy reaction with anger, and none with laughter, as they say the number one trigger is.



#28 Andrew

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Posted 20 June 2013 - 09:50 AM

I get "that" feeling/sensation in the back of the head too...in the area just where your skull joins the spinal column. I know it's gonna be a bad day while waiting for the inevitable to happen. 

 

Man, that nails it.  Exactly that spot.  



#29 Andrew

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Posted 20 June 2013 - 09:56 AM

I have the same problem!! I was beginning to think for a while that maybe the cataplexy part of my diagnoses may have been a mistake.. but i too suffer from agoraphobia ( afraid to go places because im so anxious about my anxiety it causes panic atacks) and i also have more of a cataplexy reaction with anger, and none with laughter, as they say the number one trigger is.

 

I get it with laughter, awe, shock, surprise, pride (like I just cracked a funny joke and everybody is laughing with me)... but I didn't used to get it with any of those.  It "grew" to those.  It was always anger at first, and never laughter.  Now it's not just anger, but anger is by far the worst in terms of frequency and strength.  Take it from me, traditional cataplexy can manifest primarily with anger quite well.



#30 slo.mo.a.go.go

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Posted 01 July 2013 - 01:29 AM

.

Thanks for putting a name to that *ahem* trigger Andrew! 

 

I was amazed to read how your C is so specifically triggered when you use yr sense o' humor, public speaking vs sitting in class. Cat is a crazy thing indeed.