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Cataplexy Triggers


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#21 Hank

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Posted 02 June 2014 - 10:49 PM

It is good to ask questions and learn.

 

I did not know I had cataplexy before I started learning about it. I just thought I had a series of injuries that I could not explain.



#22 Kriqit

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Posted 03 June 2014 - 05:53 AM

Well, I think my first cataplexy attack happened three years ago. Just had some Buffalo Wild Wings with my best friend and ex. Who decided prior to date, break up, and hate each other. So imagine them two, plus me, in a car. All of a sudden, my eyelids felt like they fell asleep, then my entire face and both my arms. I couldn't even lift my arms to change the station. The only thing they noticed was my head tilt a little, and my half vacant expression. I was completely aware, and could at least get us somewhere to stop, but I couldn't figure it out. MRI came back fine. They figured it was a complex migraine, but I never get headaches. The other time was a year ago, while watching a movie, waiting for the girlfriend to get home. Same thing. Had no function, and standing was like a box of lead dropped on me, and my legs were wobbly. I'm thinking those were my first attacks beyond the head bobbing and dropping things. They probably lasted longer than normal because I fought the entire sensation. Both times I felt the need to nap as soon as it stopped.

#23 Hank

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Posted 03 June 2014 - 06:37 PM

That sounds like Cataplexy. That will be very important to tell your doctor about.



#24 Kriqit

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Posted 04 June 2014 - 04:18 AM

Has anyone been triggered by "pandiculation?" Particularly those incredibly intense half-yawn-half-stretches you usually do in the morning? I almost always have to catch myself after one of those. No matter what time of day, those good morning stretches make my knees buckle, like the sudden relaxation is too much.

#25 sk8aplexy

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Posted 08 June 2014 - 08:27 PM

Man, do I miss those good old morning stretch/yawns...  Lost them years ago, somewhere in my early 20's.

I have one or two, each year.  When I do have them, I am StokeD.

 

My cats being silly and cute have triggered a few collapses.
Watching 'Curb Your Enthusiasm' was intense.

 

And what you say Kriqit: "They probably lasted longer than normal because I fought the entire sensation."  That is definitely the case. 

When I first note the Cataplexy hitting, obviously my focus goes away from whatever (humor, oddity, frustration...) is triggering it and I don't fight the Cataplexy in any way.

If I can manage to lay down and sprawl out I seem to lessen and/or in part avoid the Cataplexy, usually this is very awkward still though because it is when the sensations -muscle flickering- are occurring and I either am beginning to already collapse or I am sort of in a frozen -weakening or teetering- momentary state.  Sprawled out, I always focus on my core, breathing slowly, sometimes counting, relaxing; within a few seconds my muscles return.  We all adjust to it in our own ways.



#26 Ferret

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Posted 08 June 2014 - 10:32 PM

And not only don't fight it but remember to BREATHE. Deeply, slowly and from the lower abdomen if at all possible. Hatha yoga taught me that.

Laughter (unexpected mirth) still does me in the most frequently.
A friend was describing his middle aged daughter in Costco last Friday. Said she runs her cart down the middle of the aisle at a quick pace muttering "Pick a side" sarcastically. I lost it...and, wowie, would I love to do that.

#27 Hank

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Posted 09 June 2014 - 09:14 PM

Ferret- you are my Cataplexy guru. I have taken your advice about not fighting a fall and I have not gotten hurt since- so thank you.

 

You say above to remember to breathe. When I have a full collapse, however, my breathing is on auto pilot. When my eyes eventually open, I can see my abdomen rising and falling- but I am not making it happen. Does this happen to you also?



#28 sk8aplexy

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Posted 09 June 2014 - 10:20 PM

When you're in, complete paralysis, Cataplexy the autonomous breathing kicks in fully as though you're asleep - thankfully.

I try to focus in on relaxing my body (like falling asleep) more than anything else.

I try to feel air come in nose and out, sometimes counting slowly.

Not focusing though too much on actual breathing.  If that makes any sense... 
Once I can remember really trying to control breathing and it made me nervous since it was so odd, afterwards as I got up it (breathing ease) came together.



#29 Hank

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Posted 09 June 2014 - 10:26 PM

Thank you sk8- good to see you back



#30 Ferret

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Posted 09 June 2014 - 11:30 PM

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.



#31 Thebrancam

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Posted 10 July 2014 - 11:45 PM

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.

#32 Ferret

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Posted 11 July 2014 - 10:30 AM

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.