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Overcome C Exercise Trigger?


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#1 sleepycakes

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Posted 31 December 2011 - 09:51 PM

anyone else who has C episodes triggered by exercise & exertion find a way to get back to exercising? i haven't found a way - i'm hoping someone here found success!

#2 caleb

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Posted 07 January 2012 - 05:22 PM

I would be interested in hearing from people on this as well. I don't have severe cataplexy; my knees just buckle occasionally. I spend a lot of time under the bar though, which would be the worst place for that to happen. So yeah, this is definitely something I think about too.

#3 sleepycakes

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Posted 07 January 2012 - 05:29 PM

I just started with an exercise physiologist and I have high hopes for success -- so far, only on a recumbent bicycle, I went from 4 minutes leading to collapse to 20 minutes leading to the brink of collapse (twitches, weakness, mental dysfunction) but no collapse -- I'll keep y'all posted!

I would be interested in hearing from people on this as well. I don't have severe cataplexy; my knees just buckle occasionally. I spend a lot of time under the bar though, which would be the worst place for that to happen. So yeah, this is definitely something I think about too.



#4 sk8aplexy

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Posted 07 January 2012 - 07:22 PM

Most depends on the activity, but also the others around and/or involved too, and is just day to day for me. Until more recently I'd not had the cataplexy beat me, although since it is severe I've lost. Have had to limit certain activities entirely, with the hopes I can still very occasionally manage or better yet return perhaps someday. Thought I'd be doing that certain activity till I was in my 40's or 50's, but at 31 it looks very unlikely. For whatever I do manage still which is basically a game or two of ice hockey a week; it seems to help a lot, if I can regularly keep my body loose and stretched, through daily very basic exercises/stretches/yoga... Also, planning days ahead for rest and proper food helps. Lifestyle...

#5 sleepycakes

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Posted 08 January 2012 - 02:06 PM

I hope to get up to what you are doing one day!
Right now 4 flights of stairs or a full body stretch and I'm down. I gauge on a scale of 1(minor weakness) -10 (collapse). I now live a very sedentary lifestyle and I still spend most days at a 6. But I am trying to stay optimistic.
Anyone find ways to improve endurance? That's what I am hoping to achieve with the exercise physiologist.

Most depends on the activity, but also the others around and/or involved too, and is just day to day for me. Until more recently I'd not had the cataplexy beat me, although since it is severe I've lost. Have had to limit certain activities entirely, with the hopes I can still very occasionally manage or better yet return perhaps someday. Thought I'd be doing that certain activity till I was in my 40's or 50's, but at 31 it looks very unlikely. For whatever I do manage still which is basically a game or two of ice hockey a week; it seems to help a lot, if I can regularly keep my body loose and stretched, through daily very basic exercises/stretches/yoga... Also, planning days ahead for rest and proper food helps. Lifestyle...



#6 sk8aplexy

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Posted 12 January 2012 - 02:40 PM

Thanks and also Best of Luck to You.

That hockey game or two a week, is basically the only time I leave my home, besides for my daily walk to get coffee.
Which is a one, 16oz cup daily (which I don't even hardly drink half of on some days), and caffeine is the only stimulant I take - besides foods.
I have to spend hours preparing myself, days actually, for the games (which are just pick-up adult games, no practices and mostly without refs).
There are game days that I just am too clouded/fogged by the fatigue I experience to go play, or other days I'll have fallen asleep and realize I'm late to leave.
Before, when I could manage to skateboard, I'd just go skate when I could feel it, unfortunately hockey isn't that way or I'd play a handful of times a week (probably mostly real late at night).

I would say and/or add that, I've found no way to improve my endurance beyond a very minimal bit over what is a long hard period of time, with gradual yet hardly noticeable effect/s in the long term.
It seems more like if I don't maintain the bit that I still have, or each time I give up and don't push on, I lose more and more of what I had.
The irreversible feeling is heavy and painful, never give up though; regardless...

#7 sleepycakes

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Posted 12 January 2012 - 03:44 PM

although not necessarily a great page, it is somewhat comforting to know I am not alone, that we are all on the same page

I totally hear you on the exertion trigger limiting not only physical activities but social ones -- certainly this is not the 'to be a hermit' I wished for in those hectic pre-diagnosed overwhelming moments

so, yes, let's keep trying and keeping our fingers crossed (but not too hard or we'll fall down) ;)