CFS Myclonis/convulsions Video

Discussion in 'Fibromyalgia Main Forum' started by Gothbubbles, Nov 16, 2006.

  1. Gothbubbles

    Gothbubbles New Member

    We're talking about the newsweek article on "Borat"

    "When I started out I thought i could never talk about aids, I could never talk about cancer. Then I hung out with Aids and cancer patients--they always had the sickest jokes!"

    I was talking to Kathy and my friend John was secretly recording me.

    ("Justin" is my brother)

    Just so you know what's going on lol.

    This is a moderate episode of myclonis for me. It's been much worse, and I've had it better.

    On Klonapin these episodes seem reduced (I just started taking it) I have another post on that subject.

    WARNING: Swear words.

    Here's the URL to the movie:
  2. makezmuzic

    makezmuzic New Member

    Hello, thank you so much for posting this. I want to apologise for the long post that is about to follow also. LOL!!!

    In the begaining of September I was put on neurontin for fibro pain. By mid month the fibro pain was doing much better, but I was in so much pain due to costochonritis (kind of like rheumitoid arthritis in rib cage) and a partially colapsed lung that I was not able to lay down. I could not bare to have anything touch my ribs, clothes, a bra, my arm laying across my ribcage. Even the weight of my body on the bed was incredably painful. I was sitting up all night until I pretty much fell asleep sitting up & lain down in my sleep.

    I soon started noticing my stomach contracting, almost convulsing just as I driftted off to sleep. Then my legs, spine, arms and neck. It was terrible, just hellasious! It would happen all night long. One after another, after another , maybe a minute apart. Just wrenching my body awake up to 14 times in a row until I finally fell asleep exhausted, only to start the process all over again if anything woke me up. By the end of september I was a wreck, sleep deprived and in acute pain from my body being slammed awake by these violent convulsions.

    I fianlly end up a mess and in the ER, was hospitalized and given atavan and taken off the neurontin. While they agreed to take me off the neurontin, the MDs were basically sure it was all in my head - stress related because they had never heard of neurontin doing that to some one. They said that in deed it was the neuro process of my brain shutting down like the "jolt" we all get when falling asleep, but for some reason my brain was giving the message for it to happen over and over again. But were still trying to say I was doing it to myself!! Go figure, I must be a very powerful person - to have that much control over my body.

    You post;

    "Sleep myoclonus occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some forms appear to be stimulus-sensitive. Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor."

    THAT is exactly what I had!! I still have a few mild ones when I'm very tired. And some weird, almost "hints" of one coming on, that never quite develop. But at least now I know that it wasnt all me - I'm not nuts (well maybe a little) and should be checked. They put me on ativan, but never did a full neuro workup on me. Actually never did anythin beyond shine a light in my eyes. Now that I know the word for what I went through, I can be more specific when I ask for a full neuro work up. Thank you very much.

    If you feel like it would you share a little about how its manifested for you?

    Thank you again. I am so sorry you have to deal with this condition.

  3. shar6710

    shar6710 New Member

    Thanks for posting this. I think you are very brave.

    People on here talk about their various tremors etc but it's hard to tell by reading what it's really like.

    I have problems too but mine are more like tremors: very rhythmic and repetitive. Sometimes it involves just my head but can spread to multiple limbs. Doesn't look anything like yours, except like you I don't have a change of conciousness.

    Maybe it's weird to compare but I'd be interested in knowing if most people's episodes are like yours or mine.

    Best wishes,

  4. Gothbubbles

    Gothbubbles New Member

    You guys aren't crazy! This is much more common that I thought even.

    I have a couple other posts about this so if you're curious please look them up.
  5. b~kay~b

    b~kay~b New Member

    Hi goth well i saw the video and i was wonderinf for your experience does it come and go i know you probably mentioned this before but i have short attention span and short memory and stuff you know how that it. for me my head shakes more like a parkinsons patient and my hands do too well gee my legs do too for that matter but since i changed to mirapex its calmed down no not gone calmed down they say it doesnt completely go away just help control some but the jerking is when i am siting down laying down you know when relaxed so i was wondering how it affects you. i apologize to prying but i am curious on how it does affect different people if anyone else would like to respond as well i am very interesed. its like sometimes i wil be standing there thank goodness i figured out stay close to walls lol and all of a sudden without feeling or realizing it my legs will wig out on me and that is when i fall well sometimes i feel like a wet noodles too i always feel the burning oh i hate the burning you know this is a crazy illness it really does have a mind of its own huh? down with cfs and fm they said myofascial pain syndrome too but it is one of the smptoms so whatever doc. down with it all! B~Kay
  6. Gothbubbles

    Gothbubbles New Member

    It depends on how I'm positioned. Like if I'm lying down my stomach and legs jerk, and my neck tends to shake side to side.

    If i'm sitting up, my back and neck shakes and i do more forward head jerks, though i can still jerk side to side.

    If I'm on my tummy my lower back and shoulders plus my neck are the worst.

    I get them EVERY DAY, though they usually get progressively worse as the day goes on. I hope that answers your questions.
  7. bigmama2

    bigmama2 New Member

    I ocassionally get these wierd seizure/ convulsions as I drift off to sleep. I'm in my late 30's and have had cfs for 12 years, buthave only noticed the convultions for a few years. it only happens when I am really exhausted and fall asleep fast (as opposed to my usual insomnia). my head and neck start convulsing for a few seconds, then I wake up, fall back asleep right away, and start convulsing again, and this cycle repeats itself about 5 to 15 times, till I wake up, or fall asleep for good. is this similar to what any of you experience? is it dangerous?

  8. Scarlett65

    Scarlett65 New Member

    My first experience that I can remember with these tremors or whatever you want to call them was right after my son was born. I had gone into renal failure, had shingles, and was one sick puppy. I would fall asleep for just minutes and wake up with a grunt that I would make. It was the weirdest thing. My doctor asked me why I did it and of course I had no idea. I would do this all night and sometimes all day, just jerking and making this grunt noise.

    Well that was 21 years ago and it has progressed to the exact same sort of jerking in the video I just watched.

    I seem to do this more often when I am in a car going over a bridge or elevated area.

    My husband can touch me and I will jerk like that too which is a big turn off to him but hey I cant help it.
  9. yellowbird

    yellowbird New Member

    i get that (as i'm falling asleep) unless I take Klonopin, too
  10. Clay2

    Clay2 New Member

    I looked this up in Google and found most information under MYCLONUS.

    Here's a governement website with a lot of good stuff. The important thing is, Myclonus is a symptom, not a disease. It occurs for many reasons.

    I used to have it when my post traumatic stress was active and I was having a lot of nightmares. It had disappeared since that's under better control. I've had a little again since getting CFS earlier this year. It seems much more intense than I remember.
  11. sues1

    sues1 New Member

    If you can.....please see a neurologist.

  12. Gothbubbles

    Gothbubbles New Member

    I have a neuro appt for january. I have good poor people insurance because I live in Vermont (it's called VHAP).

    I can see any doctor as long as I have a referral (my doc is a good guy and makes me any referrals I want)

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