AndrewIrish
Stalwart
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Hey all,
I have JME, and I've written extensively about how I have had very bad myoclonus associated with that - to put it blankly, anytime I have an intention to move, or have to put my mind to something, I have myoclonic jerks - I can really only do somewhat mindless activities. I have problems having conversations with people because if I get 'too excited' or 'too into it', I start jerking everywhere and stuttering and tossing things...
In any event - it used to be a head-nod, only my shoulders and body would jerk severely once a day or so - now, it's the predominant 'myoclonic jerk' I have/ To upt it this way, I've gone through 6 'mice' for my PC, and 2 monitors in the last 2 months. I can no longer talk on a phone with strangers 'cuz if I get too into a conversation, I toss things.
I can't really do anything that requires concentration or focus, anymore.
Because the normal 'head bob, slight movements' have become violent myoclonic jerks predominantly. I'm 10 months clean tonic clonic wise but the jerks (which have happened many, many times a day for 6 years now), are more violent and forceful then ever - to the point, I have to pretty much be a vegetable to avoid hurting myself, others, breaking things... I jerk so hard it's like I'm throwing a roundhouse, the way my body contorts.... and several times in the last couple of weeks, they're so violent, I'm dropped to the ground.
I have this constant 'jitteriness', like I've had 5 cups of coffee, all day long anymore. I spend a lot of time just laying down - thankfully I'm unemployed, I don't know know how I'd work right now.
I saw years ago something called 'chess epilepsy' - perfect, 'cuz I've never been able to play chess since this started 6 years ago. I can't play a game of 'war', with a deck of cards. When my wife asks me to pull things out of drawers, I zone out for a few seconds anymore.
Last week, I was buying a pack of cigarettes(I get it, it's bad, I'm trying to quit...), and my broher was with me. I said, 'I'd like a pack of the red ones...', and that's it. She needs more info then that, like a brand, and I stood there kind of 'wonked out' for like 20 seconds. That's happening a lot lately - these kind of 'confusion/weird' things, all day long. I mean, I'm concious and all, it's just like... I don't know how to explain it, like I'm... like I'm confused or something, but not... it's really hard to explain... I don't think they're 'absence seizures' but... I don't know if I'd know, ya know?
But yea, I'm at the point that unless it's something 'second nature' to me(like typing and even that is a trigger if I'm tired or stressed)
Also, there's been a lot of personality changes happening to me. I used to be an avid writer - wrote everyday. I mean, every single day, a short story. I haven't been able to write in 3 months. Nothing, like a weird form of writer's block... and it's just... my head is all messed up.
Do I have some freak-in-a-million myoclonus, or is something else going on that I don't know about?
I have JME, and I've written extensively about how I have had very bad myoclonus associated with that - to put it blankly, anytime I have an intention to move, or have to put my mind to something, I have myoclonic jerks - I can really only do somewhat mindless activities. I have problems having conversations with people because if I get 'too excited' or 'too into it', I start jerking everywhere and stuttering and tossing things...
In any event - it used to be a head-nod, only my shoulders and body would jerk severely once a day or so - now, it's the predominant 'myoclonic jerk' I have/ To upt it this way, I've gone through 6 'mice' for my PC, and 2 monitors in the last 2 months. I can no longer talk on a phone with strangers 'cuz if I get too into a conversation, I toss things.
I can't really do anything that requires concentration or focus, anymore.
Because the normal 'head bob, slight movements' have become violent myoclonic jerks predominantly. I'm 10 months clean tonic clonic wise but the jerks (which have happened many, many times a day for 6 years now), are more violent and forceful then ever - to the point, I have to pretty much be a vegetable to avoid hurting myself, others, breaking things... I jerk so hard it's like I'm throwing a roundhouse, the way my body contorts.... and several times in the last couple of weeks, they're so violent, I'm dropped to the ground.
I have this constant 'jitteriness', like I've had 5 cups of coffee, all day long anymore. I spend a lot of time just laying down - thankfully I'm unemployed, I don't know know how I'd work right now.
I saw years ago something called 'chess epilepsy' - perfect, 'cuz I've never been able to play chess since this started 6 years ago. I can't play a game of 'war', with a deck of cards. When my wife asks me to pull things out of drawers, I zone out for a few seconds anymore.
Last week, I was buying a pack of cigarettes(I get it, it's bad, I'm trying to quit...), and my broher was with me. I said, 'I'd like a pack of the red ones...', and that's it. She needs more info then that, like a brand, and I stood there kind of 'wonked out' for like 20 seconds. That's happening a lot lately - these kind of 'confusion/weird' things, all day long. I mean, I'm concious and all, it's just like... I don't know how to explain it, like I'm... like I'm confused or something, but not... it's really hard to explain... I don't think they're 'absence seizures' but... I don't know if I'd know, ya know?
But yea, I'm at the point that unless it's something 'second nature' to me(like typing and even that is a trigger if I'm tired or stressed)
Also, there's been a lot of personality changes happening to me. I used to be an avid writer - wrote everyday. I mean, every single day, a short story. I haven't been able to write in 3 months. Nothing, like a weird form of writer's block... and it's just... my head is all messed up.
Do I have some freak-in-a-million myoclonus, or is something else going on that I don't know about?
