angeline

Cataplexy Triggers

28 posts in this topic

Sk8aplexy's way works really well. Remember his video?...falling to the floor? That's the way I used to experience C when standing too. I automatically hit the deck to protect myself.

I'm usually with my hubby now, in some sort of social situation, when things happen. I'm also usually sitting although when I started doing that I don't remember but it sure is safer. I grip the edge of the chair or the table to try and stop my arms from spazzing out. My hubby always starts yelling immediately "Breathe!" He knows exactly how I will react to certain situations. Being a good girl, I try to oblige and have to make a concentrated effort to do so. Diaphragm in...diaphragm out.

Okay...carry on.

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I was always falling asleep in movies, while driving, and never felt awake but my friends and even my wife always said, "Oh that's just the way Branden is." I really didn't think anything of it until one day I was standing in the kitchen and said something funny and felt like my head dropped really fast and really sudden. Then it started happening more often and more intense. That's when I went to the doctor and was diagnosed. I will say that to this point I have not yet fully collapsed. It's always my arms, head, jaw, eyes fluttering, I've learned tricks to cope.

Normal Triggers:

-Laughter. Especially when I am saying something funny. I am cursed with a quick wit and cataplexy...

-Anger, even though my doctor says that's not actually a trigger...it is for me.

-Fear, If thats' even the right word. For example, the other day I saw a WWII vet and I wanted to go shake his hand and thank him. as I started walking toward him my jaw goes slack, vocal chords stop working, and eyes flutter. I'm sure I looked like an idiot.

-Being Startled.

-Sometimes tilting my head back and drinking cold water...I guess that's probably surprise.

Some weeks are great. I have very little problems. Others are REALLY bad. Especially if I am working really hard for a week then the next few days/week will be really rough. The only time I almost fully went down was during a week long fishing trip. Early mornings, late nights, LONG days.

I'm starting Xyrem for the first time, probably tonight so here's to hoping for a "normal" life...

One last weird question. Can anyone else feel that it's going to be a bad day from the moment you wake up? I don't know why but I feel it right in the middle of my chest/lungs and of course my head... Maybe I'm just odd in that.

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You're not odd...you're NwithC...we be special. Most friends call me The Laugh Meter...they run their funnies by me to see if I'll react.

 

Yeah, it's gonna be a bad day when I wake up with a heavy sensation at the back of my head right where the skull joins the spine. I will actually try and trigger cataplexy by goofing around and being a smart ass with my hubby...he knows what's going on and will try and take the opportunity to scare the krap out of me.

When the cataplexy happens, it's a relief and then, I just go back to "my" normal.

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