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Cataplexy Triggers

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Can too much salt trigger cataplexy? If not, what are the triggers that you all have noticed? I noticed quite a few of you have problems when you laugh or get angry/sad but are there other triggers that may be less common?

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These are mine:

Angry, or really hurt or sudden disappointments

Core body temperature low

Thinking about having cataplexy

Pushing myself too much when working out (comes the following days)

A drop in blood pressure

A drop in blood sugar

Too much internet

Pushing myself to stay awake

Not getting enough sleep

Not eating enough

Too much on my plate - ie severe stress

Certain food allergies

I think that's it. If I think of something, I'll edit my list.

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Yeah, mine definitely include:

Not getting enough sleep

Pushing myself to stay awake

Pushing myself too hard physically

Pretty much any time I push myself too hard and my body is feeling weakened because of it... cataplexy is bound to happen.

Then of course the normal triggers like laughter, shock/disbelief, sadness/helplessness.

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My triggers:

Anxiety - in very crowded places for example

Low blood sugar

When working out (most common -- I am always close to grabbing something in the gym just in case I go down)

Super excited

Feeling overwhelmed

(Never when Laughing and I laugh a LOT). Thankfully that is not my trigger (knock wood).

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I recently joined my dorm's step team and have been having more trouble with my cataplexy than usual. Does anyone have any tips for controlling it?

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Interesting you all say exercise is a trigger. I get cataplexy every single time I bike really hard or lift weights. It never fails. I don't lift weights any more because of it, it's kind of scary. I wonder why exercise causes it? I usually feel really good, sometimes euphoric, after a good work out...I wonder if in a way that sort of feeling is what is actually triggering the cataplexy?

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Looking back my main trigger... dont judge...

was being in a public place and having smoked MJ... or even just with someone i didnt know well... both those things cause panic, so it kind of went hand in hand

10 years later...

when i am super tired

and i scare really easily... this is the worst, opening a bathroom door at work with someone on the other side, can not tell you how many times i fell to my knees

I think I notice it a lot more now that i know what it is...

Just starting driving a manual car... nothing like get scared when someone in front of you slams on the breaks and your legs are shacking/not really working, and you almost wreck! :wacko:

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Looking back my main trigger... dont judge...

was being in a public place and having smoked MJ... or even just with someone i didnt know well... both those things cause panic, so it kind of went hand in hand

10 years later...

when i am super tired

and i scare really easily... this is the worst, opening a bathroom door at work with someone on the other side, can not tell you how many times i fell to my knees

I think I notice it a lot more now that i know what it is...

Just starting driving a manual car... nothing like get scared when someone in front of you slams on the breaks and your legs are shacking/not really working, and you almost wreck! :wacko:

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For starters I don't judge anyone...:) it seems like my main triggers are stress and laughter. Sometimes out in a crowded place I feel so nervous about having a cataplectic episode that it sometimes brings them on faster the harder I try to prevent it. Or if I miss I dose of Xyrem I'm doomed the next day. A stress free life is suppose to be the key to success, but who can I have one of those........

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I am new to this, so here is what I have figured out so far:

laugh, joy, sad, excited- tingles in legs, arms, head- like goose bumbs without the bumps

laugh really hard- need to sit down, head drops, body tilts over

startle- knee buckle with a slow motion fall- I can usually use an arm to direct my descent, face sags

embarrassment or attention drawn to me- face sags, speech stutters, vision fuzzes like static, hands drop- I basically look drunk. This happened a year ago when I was pulled over for a minor traffic violation. It resulted in police back up, searched my trunk for drugs because no alcohol on my breath. They asked if I needed an ambulance. I didn't know it was C then- I just thought they were a little too into their job.

any emotional stress makes everything worse.

Intense exercise makes my legs heavy. Like jumping rope- the faster I go the slower I get. Moderate exercise - my knees get shaky but only after I stop. I broke my elbow when I fell backward after completing a run.

Objects coming at me- this one fascinates me. catching a ball, pen, keys, a bug/bee flying at me- causes my arms to go slack and I tilt to the right, but just briefly

****If anyone has found a good way of explaining this to strangers without giving your medical history, I would love to hear it. Overly curious/ annoyingly helpful people are hard for me. I just need a quick phrase so I can recover. I joked with my wife that I should say I've got "bad gas", so they will leave me alone quickly and abandon their curiosity. She is too polite to encourage that, but agreed it would achieve the goal.

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These are mine:

Angry or sudden disappointments- in fact any sudden strong emotion including grief.

Core body temperature too hot

Pushing myself too much when working out (comes within the hour)

A drop in blood sugar

Fasting ie going without food for too long

Prozac ( yup makes my cataplexy worse )

Not observing a regular sleep schedule.

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Never had cataplexy for 14 years, just extreme EDS, been on Ritalin that long. After developing a progressing photosentivity issue for the last two years, my doc put me on Topamax for Christmas, an anti-seizure drug for epilepsy. It really helped the seasickness of the photosensitivity, but caused me to have my first cataplexies. This would only happen after my Ritalin wore off at night.

 

So I told my doctor, go figure out that nice little chemistry set going on in my poor brain! Luckily, it was only a side effect and went away after a couple weeks. (I also had to figure out, on my own, that the main source of my photosensitivity is DLP projectors.)

 

I can say that I now know what some of my narcoleptic brethren deal with on one hand, but also know now what I may deal with one day as well. Sure wasn't any fun, but I guess I can think of worse things too!

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for a long time my main trigger was "synchronicity," or believing that some occurrence was a meaningful coincidence.  there's something called "apophenia," which i believe is the 'delusion' that everything is connected!  all it took was seeing someone with the same shoes i had, and it was 'omg!' and the ground would come up to meet me.  


 


i was lucky, and was soon able to do the 'fold and fall' -- lowering myself to the ground, so that i rarely hurt myself [unless i did:  i've broken an ankle, both bones in my calf, each foot, and an eye socket, all at separate times…].


 


besides, the situation was almost always such that i could FEEL it coming on, and eventually sort of learned to avoid a cataplexy attack.

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one more trigger i used to have:


 


i read once on the old u.k.a.n. site [united kingdom association for narcolepsy, now narcolepsy uk] that in a survey of possible triggers, respondents listed "Response to a Call for Action" as a likely trigger.


 


well, i got put on the nn board of trustees [not bragging, i couldn't even serve a term because of other medical stuff].  but if that's not a call to action, i don't know what is!  the thing is, as soon as i was asked [by telephone], i dropped the phone and LITERALLY fell off my chair and onto the floor because all my muscles went limp!  ;-> 

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I know I'm doing necromancy here, but has anyone ever been triggered by physical pain? What would the difference between shock and cataplexy really be in that case?

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Ok- cataplexy is a sudden, bilateral loss of muscle tone often triggered by an emotion. It ranges from mild, subtle muscle weakness to complete paralysis. There is no loss of comsciousness.

Weakness in response to physical pain is normal. Someone with documented cataplexy may have extra trouble with sudden pain or fear from an injury.

If this is your only experience with percieved muscle weakness, it does not sound like cataplexy to me.

If you think your experience in response to pain was beyond normal, please give more info and I will be interested to read.

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What you have described does not sound like cataplexy to me.

 

I have had sports injuries caused by cataplexy- but I have never had cataplexy caused by an injury.

 

I am glad the bike injury was not more serious. It is not uncommon to feel weak or drained after an injury.

 

And the piercing sounds like you felt faint afterward.

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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.

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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.

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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.

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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.

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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?

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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.

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