13 replies to this topic

[angeline]

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?

[Sleepingcrow]

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.

[wisher]

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.

[Patrick Sandy]

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).

[kjordan93]

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?

[keean]

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?

[Megssosleepy]

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!

[Megssosleepy]

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!

[shakysleppy]

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........

[Hank]

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.

[Garch2010]

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.

[cnlmustard]

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!

[tkozman]

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.

[tkozman]

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!  ;->