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does anyone else have action myoclonus,

Hi just wondering as Ive never spoke to anyone with myoclonus which is activity related ? what is it your probably thinking Pretty hard to describe and maybe quix can give a better description than me even though Ive got it ! Basically as soon as i stand up and try to walk I get this electrical type wave which starts from my head inside weird I know . Then I look like Im jerking up and down violently It comes in waves and I can actually feel it coming . The only thing that controls most of it  is clonazepam Anyone else have this or something like it ?
9 Responses
230948 tn?1235847929
I'v not had the movement one but back in May before going on the lyrica i used to get ones as soon as i rested now there just twitching at rest, or spasms which i get if i dont take my diazapan but thats mainly at night.

I hope you find someone on here who you cant talk to that about.

Hope your well. x
Avatar universal
Hi samantha yep I get those ones at rest as well buzzing , spasms etc quite annoying at times thanks a lot though ! Best of luck for tomorrow hope you find some answers xxx chris
Avatar universal
Hi!  Yes, I have myoclonus, too! I know exactly what you mean about feeling it coming, and if I tried to suppress which I often did it would just get me harder.  Mine isn't action myoclonus, it happens more when I'm relaxed, although it hardly ever happens anymore.

My diagnosis was spinal myoclonus, and in the beginning I would jerk so hard I'd fall down.  Mostly, though, it just happened when I was sitting or laying down.  It was worse when I was laying down on my left side. This was my first medical issue and it was so disturbing that doctors sent me straight to a neuro at the emergency room and then to Mayo Clinic (12 hour drive).  Every doctor I'd go see around here would go get a colleague to come watch me!  I felt like a science experiment!

How long have you had it?  I got it 9 years ago.  It has subsided over the years, but if I get really worn out I'll have a little one.  Now I just get twitches in my legs and hand.

If I take an antidepressant it happens more, and I'm wondering if that caused it or if it just increases the effect.  But none of the doctors thought it was caused by that so I don't know.  Since I have quite a few other symptoms it might go along with those, and it doesn't always happen if I take an antidepressant.  The last time I tried an antidepressant I had a hard time sleeping so the myoclonus may have increased because I was sleep deprived.  Who knows.  So I don't take any meds.  Even though I told my doctor I wasn't depressed she still wanted me to try the antidepressant to see if it helped with the fatigue.  Instead I had this awful wired feeling inside of me that made it so I couldn't sleep, even though I was tired.  

So that's been my experience with it.  I don't know anyone in my area that has ever had it like I have so it's nice to talk to someone that knows what it's like.
Avatar universal
Hi thank you so much for replying i have never met anyone else who has it at all Ive had it 3+ years and god its awful isnt it ! Mine starts off as soon as i stand uop and yes if you try to repress it it does get worse . Thats how all my problems started i\ had really bad foot spasms , then walking problems then horrendous myoclonus . I spent total of 6 wks in local hospital with drs getting collegues to come and look bit like an exibit as well Really unpleasant experience isnt it ? They never diagnosed the cause of mine they just put it down to a neuological disorder of unknown eitology Great !!!! I don't think !  Everyone stares as well because it does look really odd doesnt it ? Re the antidepressents I know they get prescribed in ssmaller dose for nerve pain etc are you sure it wasnt for that purpose  ?
Avatar universal
Forgot to ask how was your spinal myoclonus dxd xx chris
Avatar universal
Your diagnosis sounds similar to mine - my doctor's notes said "possible autoimmune etiology."  I was diagnosed at mayo clinic at the movement disorders clinic and they hooked me up to machines and let the jerking begin.  They timed the speed and it was faster than something I could conjure up on my own (which I knew).

Yes, it startles the world around you.  It would always happen while I was sitting in church and probably scared some people.  I'm not really self conscious so it didn't bother me too much but it was a little embarrassing.

I took the antidepressants for PMS.  Never took more than the lowest dose.  

I would say my jerking lasted a couple years and then I got pregnant and it really subsided after that.  Everyone said I should be pregnant all the time - no thank you - because my health was so much better.

I'm with you - I'd much rather know the cause, because it's so alarming you'd think someone could figure out what's causing it.  If I ever find out I'll be sure to let you know!  Have a great day!

FYI - I'm 35.
Avatar universal
Sounds very similar Im bit older than you Im 50 lol going on 85 or thats how i feel sometimes . Yes I would agree the speed is unbelievable I couldnt jump up and down as fast if I tried! I wasn't really self conscious until I had myoclonus at all but after a few weeks of for example going in the lift in the hospital and everyone else in the lift experiencing the vibration from me jerking up and down I was !!!!
Church experience sounds awful yikes !!! As for being pregnant all the time as a suggestion hmm don't think thats the best course of treatment either !  If ever find find out whats causing mine I will post it as well ! Take care and thanks yet again for answering I was beginning to feel a bit like an alien lol chris
Avatar universal
Hi  I too have action myoclonus and have been in hospital for two months and haven't been able to walk for three. My symptoms started 4.5 mths ago and I have it in my legs, arms, hip flexors, and neck. I have better days and bad days. I am in Australia and currently taking 2.5mg clonazepam, one fluoxetine tablet and 20mg of baclofen a day but i am still getting worse. Any advise would be greatly appreciated. Some days I can't even feed myself. Thanks hope
Avatar universal
My husband also has action myoclonus .  If you d. Like to chat, I am here.  :)
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