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[Manda]

Hi all 

 

I'm having a few issues with my cataplexy at the moment and need some advice. I take a dance class one or two times a week and am finding it hard to stop my knees from buckling directly after the sessions finishes. Today I was sort of flagging towards the end of the session and when I walked towards the benches to get my water bottle I felt the tell tale weakness starting in my kness and fell down twice. It took quite a while for the strength to come back (longer than usual) and for me to feel like I was no longer being supported by jelly. The thing is when this happens a lot of people get worried that I am fainting and it takes a lot of effort to try and explain to them that am ok and what cataplexy is. I get so embarassed by the whole thing and feel like crawling under a rock .

 

It be would nice if I could gain some control over it and leads me to my question. Does anyone have any tips for cutting down cataplexy episodes with exercise?? Does it make a difference how hard you push yourself or whether you've had many sleep attacks during the day?

 

ANY advice much greatly apprieciated 

 

Amanda

 

 

 

[sk8aplexy]

Adjusting to it, paying close attention to your physical and mental
state/s, as well as all that consumes and/or distracts you; are likely
the hugest factors for such adjusting, as well as learning a lot about
how the disease works -and as similar as it can be, it is vastly
different for each one of us-...

For me, it seems the biggest factor is stress-level/s, also strength level/s play into it;
as I can Cataplexy from occasional over-excersion, while skateboarding
but not so much while playing ice hockey. Explaining that to anyone
seems to go to immediate; judgement, confusion, disarray and/or complete
misunderstanding. :/

 

Over these years, a sort of 'non-emotive state' (only
way I can describe it) became important and a sort of mechanism that
helps me both; to break free of the paralysis and also to, at times,
keep it at bay. It is basically this: 'Focusing upon my physical
with my mental, while tuning out of my mind -as much as I possibly can
during the first sensations of Cataplexy- everything. Breathing and
focusing on that. Sometimes if it is that freeze/pause or I know that
I'm collapsing, first getting to the ground and/or directing my weight
towards the safest location around me (this is where skateboarding
couldn't have prepared me better for such); is key. And sometimes, when
there's any flickering, I just lie down immediately and sprawl my limbs
out, and go to the non-emotive place for a few seconds; and voila, I'm
back up within seconds.'

My Cataplexy episodes tend to only last a few seconds. And, this is important, the more that I fight it/resisting it, the harsher and stronger the episode is and/or will be.

 

Edit  Addition -> Wearing a 'medical bracelet or necklace' (that you keep exposed) with an emblem and whatever custom description you put on it; has for me lessened the worried responses of others.  It allows me to just afterward, hold up my arm or point at my chest, and say 'I'm Narcoleptic, there's no reason for concern, that was what's called Cataplexy.'  I have both and wear one of, at all times, sometimes both; I got mine from americanmedical-id.com...  (search the forum, I have a post somewhere with what I have written on mine).

Good luck.  <-  End Edit