How to stop myoclonic jerks?

[AndrewIrish]

Hey all,

Been a while since I posted, but was officially diagnosed with JME.

Got laid off a couple months ago and lost my insurance, the meds they had me on ran out, was started on taking some generic called Topiramate.

It worked and warded off any Grand Mal seizures, yet that(even when I was taking it) didn't help at all to stop the myoclonic jerks(where my arms and upper body twist forward like getting shocked, I'm occasionaly knocked off my feet...)

Case in point, right now I'm completely untreated by medication or anything, the jerks are worse then they've been for years. I've had them daily for years, yet now I can barely do anything without having them. Mine aren't photosensitive - they come from having to make decisions, strategy, calculations... pretty much damn near anything where I have to deeply 'think' - which, goes without saying, is terribly annoying and obstructive to a lot of simple pleasures and life have-to's.

Is there any advice out there, herbal, meditative, medicinal - ANYTHING, that can just.... STOP these from happening. Alleviate it...

.... the only thing I've come up with is drinking. When I'm drinking beer, they're diminished. When I'm pretty much drunk, they're absent.

Now, having to drink pretty much all the time isn't an alternative and I'm pretty sure, same as last time when I was fighting these same things, I've turned into a mild alcoholic. (As in I hate the taste, don't get much out of it, bt when I'm at drinking, I'm calm, the jerks stop and so on...) It's not the best treatment, by far.

I need a better plan to control these jerks.

Anyone, got any ideas at all?

 

[Rae1889]

Well that's what I have been diagnosed with, but I think they are wrong *i think I should have asked where the blips on my EEG originated from* but I found since taking magnesium with my AED it really cut down on the jerks

 

[AndrewIrish]

One thing I've also noticed...

Just ot put it out there and also because it's been a curiosity of mine...

... I've had three TC's this year(First year, having them at all.)

Each time, they were precipitated with the myoclonic jerks - yet they kept coming and coming for at least... I don't know, 30 seconds or more(For my jerks at least, for them to be that continous, it's scary as hell.

I also had an additional question but didn't want to clutter the boards anymore so I'll just put it here.

Every time I've had a TC, I lose conciousness obviously. I wake up after a while, feeling as if I've run a 50-mile marathon, sluggish, tired.... just completely WIPED OUT.

But one thing is wierd about it all, wondering if this is the experience for anyone else - I know of the jerks happening, know I'm having them, then just for the briefest, briefest of moments, maybe only a few seconds, I want to scream. I know something is wrong, I'm jerking, I'm jerking, I try to scream... it's been the samme, each three times.

I try to scream - but can't. Mount won't move - not lock-jaw or anything, just won't move. I'm actually aware, for a few moments, of my own inability to make my body do what I'm telling it to and that's usually just - scream!

It's horribly frightening - horribly. First time it happened, I thought I was dying, having a stroke - something. It's that way every time now, though.

Before I start convulsing on the friggin' floor, that I don't mind. I don't remember the seizures, thankfully. It's those brief, brief, very few moments of... being like a prisoner in my body, that scare the living hell out of me.

Anyone else ever have this happen prior to a Grand-Mal?

 

[Billyboyboo]

I had one Tonic Clonic Seizure, it scared me badly!!!

Hold up, I had 2, I was put in the hospital, and the nurse (duh!!!) gave me this medication that induced a seizure! And ya know my chart had Epileptic written on it! I couldn't remember the first Tonic Clonic, my mother told me what I did afterwords and it scared me, I barked and growled, I wonder why I growled??

Beyond me, but they scare me. :twocents:

Billy.

 

[Meetz1064]

I, too

have had more luck with controlling my myoclonics while taking magnesium. True, I still take meds, but it DOES help....it's great for muscle cramps and migraines so it makes sense that it helps with the myoclonics.......but that's just me.

But there's no harm in trying.

If you opt to try it, work your way up slowly, about 200 mg at a time (that's what it generally comes in , in the pill form--and *blushing* once your stools become loose* you need to back off to the dose right before that.

There is also liquid (ionic) magnesium, it hits your bloodstream quicker. This is also trial and error--start out with a couple of drops and work your way up.

Also, have you considered neurofeedback? It may not be cheap, but it is a non-medicated way to work on controlling the seizures....