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Those Of You With Periodic Paralysis


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hey i wonder.. what do you folks do who have sleep and/or periodic paralysis... what do you do to help the stiffness?

and just to clarify i dont mean normal old stiffness.. but holy cow everything is so stiff after an epsiode that 6 hours later you still can barely move those fingers or toes.. leg alone legs.. even my hips are stiff stiff stiff!

I try flexing my fingers and stuff but. that doesnt go voer well.. makes me cry and cringe.. and want to bite my fingers off!..

i was on a med to treat the periodic stuff.. but i had to go off of it.. and my doc still has to give me something different.

Uh.. those of you who have this probably know the stiffness im referring too.. its a head to toe thing... thanks in advncae for any pointers. im paralysing ALOT.. yuck and ouch..

oh do any of you get the extremely tight stiff paralysis on your face as well> anything help that?

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My periodic paralysis causes me to become a complete noodle, unable to move. I weigh 100 pounds and it takes two to three people to lift me, because i slither. I don't know about stiffness.

Afterwards, my movements are very slow, clumsy, or jerky, but I don't have the symptoms you are describing. What did they put you on for it? It's my understanding really the only thing is K+ supplements and a really low carb diet.

I'd be interested to know if they have meds for it. I do get muscle cramping and twitch like crazy when my K+ starts to drop, but it's not my whole body.....morgan

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oh believe me i get the muscle cramps and twitching as well... my cramps are all over... and my muscles feel like they are being torn to shredds and they burn like anything i ve ever felt before...

but on the other end of the spectrum i get get the stiffness tht last for anywhere from hours to days.. i get that after the twitching and cramps.. sorry i should have explained tht a bit better..it also depends on what kind of paralysising that im doing to.. sometimes if its sleep related.. i wake up stiff as a board. then as i come out of the sleepy stuff.. i turn into silly putty...other times.. im a blob first then stiffen..

i cant help but thing there is something other then that going on.. what i dont really know..

the med i was put on was called diamox... i was put on it for 2 reasons.. my pots specilist put me on this.. he said that it will leve out my potassium levels... and hopefully help the periodic related paralysis..

the seconds reason i was put on diamox was to treat brain edema.. cause or origination unknown at this time...

diamox was original a weak diuretic.. my doc said they found that it helps periodic paralysis.. as well as brain edema....

I unfortunatly could not tolerate the diamox and had to go off of it...

i know that im having symptoms that dont quite fit anywhere with any of the illness's ive been dx'd with...thats why i think something other then paralysis is going on.. on top of everything else... ive pretty much stumped all my specialists.. so im looking for ways to cope with the pain on my own.. as nothing else helps

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yeah im exhausted afterwards as well.. and generally sleep several hours after a bad spells.. only to wake up and do it all over again.. then the pain level is so bad that i beyond exhausted.. and the pain is unreal...booooo

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