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anyone else have myoclonus ?

Just wondering has any one else got or had myoclonus ? Ive never spoken to anyone else that has ? thanks chris
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338416 tn?1420045702
Yep, it's pretty awful and wears me out. I take Keppra for it now, and it's effective.
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Avatar universal
I am a 65 year old female. Thank you so much to all the people who have posted about their myoclonus I thought I was going crazy! Mine began suddenly 3 years ago after taking some medication for neurological pain in my legs. I was hospitalized for 2 days and a week ;ater again in the middle of the night this time and off to hospital again. This  began  a search for a diagnosis which has included Parkinsons Epilepsy and other ideas. Finally I went to a movement specialist and was diagnosed with Myoclonus. Must be spinal I think as it usually begins in my neck and sends my head nodding then arms and all the rest! Can start in my legs though. Can be at night and will wake me violently. I have even bruised by chest with my arms flinging so violently. Once again, I am so grateful to hear the stories from others. I am so sorry for each of you and hope you will find the strength and courage to plod on. PMR
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667078 tn?1316000935
This is an old post. I understand what you are going through. Mine causes me to bite my tongue all the time.

Alex
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Avatar universal
Omg I have this sleep myoclonus and it totally contracts all my muscles but one at a time. I sometimes practically literally fly off the bed. Unlike all the you tube videos I see of people with myoclonus. Mine is only effected when there is a loud noise or a sudden vibration, anything sudden.  I wake up with the jerk. I'm a terribly large building and everyone here is insane. Some people can hear me gasp or fly off the bed and I suspect they are now causing sudden vibrations by hitting a wall etc. for their entertainment. Other people in the building get mad at the loud bang and hit the wall back. Thus causing others to retaliate. Its non stop and its getting terribly worse. I literally have slept about four to six hours in the past seven days literally. I am going insane. I'm not happy that you have or had these similar experiences. But I am relieved to know that I am not alone. Sincerely
Random Stranger....... Gabriel  
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Avatar universal
Omg I have this sleep myoclonus and it totally contracts all my muscles but one at a time. I sometimes practically literally fly off the bed. Unlike all the you tube videos I see of people with myoclonus. Mine is only effected when there is a loud noise or a sudden vibration, anything sudden.  I wake up with the jerk. I'm a terribly large building and everyone here is insane. Some people can hear me gasp or fly off the bed and I suspect they are now causing sudden vibrations by hitting a wall etc. for their entertainment. Other people in the building get mad at the loud bang and hit the wall back. Thus causing others to retaliate. Its non stop and its getting terribly worse. I literally have slept about four to six hours in the past seven days literally. I am going insane. I'm not happy that you have or had these similar experiences. But I am relieved to know that I am not alone. Sincerely
Random Stranger....... Gabriel  
Helpful - 0
Avatar universal
Omg I have this sleep myoclonus and it totally contracts all my muscles but one at a time. I sometimes practically literally fly off the bed. Unlike all the you tube videos I see of people with myoclonus. Mine is only effected when there is a loud noise or a sudden vibration, anything sudden.  I wake up with the jerk. I'm a terribly large building and everyone here is insane. Some people can hear me gasp or fly off the bed and I suspect they are now causing sudden vibrations by hitting a wall etc. for their entertainment. Other people in the building get mad at the loud bang and hit the wall back. Thus causing others to retaliate. Its non stop and its getting terribly worse. I literally have slept about four to six hours in the past seven days literally. I am going insane. I'm not happy that you have or had these similar experiences. But I am relieved to know that I am not alone. Sincerely
Random Stranger....... Gabriel  
Helpful - 0
Avatar universal
Do you have a diagnosis for yours? This happening to me at night so bad I think I am having a seizure. I cant get to sleep because of it.
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Avatar universal
I have severe myoclonic jerking too -- it causes my entire arm to *violently* jerk to the side uncontrollably, and snaps my head back so hard that I almost black out (and can actually give myself a concussion if I'm too close to something hard when it happens). Rarely, it can take a leg or such as well.
Diagnosed with one large lesion.
Neither Clonazepam nor the AEDs like Topamax or Keppra have had any effect at all, neither have muscle relaxants like baclofen or flexeril.

I recently had a three-day IV solu-medrol infusion which seemed to make it WORSE, and the Copaxone just burns but its only been two months so too soon to tell...
Anyone have any other suggestions?
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Avatar universal
I was diagnosed recently with spinal myoclonus.   It took doctors 3 months to figure out what was going on and to believe that there was a problem.  

Mine was caused due to trauma to the spinal cord in a car accident.  Symptoms of the myoclonus didn't appear until 5 months after the accident.

I have taken bacopa, a natural supplement.  It somewhat calms the spasms, but not completely.

I have resorted to minimizing certain neck movements.  This means I use a music stand at work, a book holder on my desk, and sometimes wearing a neck brace helps stabilize the neck so that the spasms don't start.  I can't look down for long periods of time otherwise my jerks will start up.

I'm curious to know if anyone was diagnosed with spinal myoclonus after a car accident.
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Avatar universal
Hello,
I see most of these posts are quite old and hope that means everyone is well by now.
I have spinal myoclonus since six year ago when I had a bad cold. It has been no big problem until mid-may when I had food poisoning or some odd reaction to a mcdonald's chicken sandwch. I know that caused it because I was sick within an hour and that's all I ate. I was in the hosp on iv for 24 hours and, since that day, the myoclonus has gotten steadily worse. I finally will go back to Mayo in Oct. - it takes forever to get in there. From your posts, I don't expect much in the way of treatment or results. May try botox if there will do it. Neurontin did nothing when I tried it six years ago.
Luckily my pain is minimal but the whole condition is tiring.
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Avatar universal
Hi,
My name is GG.
For two years now, I have had constant ear popping in both ears. I have had two bilateral ear surgeries to inject collagen to what they thought was a patulous eustachain tube, to which both surgeries didn't work, The poppIng remained the same as before as if nothing was done. Today, I was told I was being referred to a neurologist for Palatal Myocronus. The diagnosis seems to fit per the video that was taken of my mouth and the constant movements. Did you ever find relief from the popping? My popping in both ears is so intense, always always popping. The only time I don't hear the popping is when I sleep.
How do you cope with the popping? Some days I handle it better the others. I find the whole popping thing so draining at times.
Did you also get headaches, did they have you get an MRI?
It is nice to learn one is not entirely alone in this kind of stuff.
tHANKS, gg
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338416 tn?1420045702
Hey, welcome to the forum!  I'm glad you found us.  Are you diagnosed with MS?  Or is the myoclonus from a different source?

Every once in a while I'll read a little bit about myoclonus.  I've been assuming that this was spinal myoclonus in my back, because of the building nature of the twisting jerks in my spine.  The legs tense up involuntarily when I move after being still for a while, so I thought that was action myoclonus.

Now I'm not sure that the legs are even having myoclonus - maybe it's something else.  It's weird, for sure.

Anyway, I found that there's a kind of myoclonus called reticular reflex myoclonus.  It causes myoclonus in parts of the body, like the legs, and it also causes palatal myoclonus.  It's caused by lesion formation in the brainstem.  I have two lesions, one in the pons and one in the medulla.  So I think it's entirely possible that that brainstem lesion is causing both problems.

I don't want to disseminate bad information, and it's very dangerous to read stuff online and think it applies to you!  

I see my neurologist in a month or so, so I plan on grilling her about the myoclonus and the leg thing.
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Avatar universal
I have myoclonic jerks in different parts of my body.  I tell my husband or friends, "I have "the jerks" today.  If I try to write a note, I can end up with  a terrible scratch mark across the paper when my hand jerks.  Mine isn't controlled because of all the other seizure medications I take for complex partial epilepsy, so we just joke about it.   You would think the epilepsy meds would control the myoclonus.
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704043 tn?1298056844
wow-- i didnt know i was so dumb!!-  i was reading this and well yes i have it, i jerk  bad.
i thought a ms thing  -guess it is. many times i thought i threw something out of place- well thanks 4 this post!    i learned something!!    tick
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398059 tn?1447945633
There was a plenty said above.  I will just add that I have many issues with myoclonic spasms.  Mirapex seems to solve most of the pain issues.  Extreme myoclonic jerks where the arms or legs sweep several feet seem better solved by reducing stress.

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Avatar universal
I have spinal myoclonus and palatal myoclonus. I have had the spinal m. for 3 years and that palatal m. for 6/7 years. I have tried everything and been on different meds. I am so frustrated and feel so alone in this condition. I really want to connect with others who are also going through this. The palatal myoclonus causes constant ear popping and is horrible. It has gotten MUCH better over the years. Ironically when the spinal myoclonus is bad the palatal myoclonus is do-able and vica versa. At one point both were horrible. Currently my spinal myoclonus is ABSOLUTELY horrible. I am in constant pain. The spasms radiant out from my spine and create involuntary jerking and spasming movements in my entire neck, rt shoulder, right arm, my entire torso, my stomach and up and down my spine. It is EXTREMELY painful. I am finding this condition incredibly draining physically and mentally exhausting and would really appreciate some support. Thanks so much. How do you deal with these constant and blatant spasms and torso/arm/neck/head/shoulder etc movements in public? I am really having a hard time with this condition. My sweet 3 year old nephew saw me do this and was moving his body around to mirror me. I know he meant no harm- none at all- but it broke my heart that I have this damn condition. I am very thankful to find this post and this sight and I will support all of you the best that I can as well.
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1530566 tn?1316213207
My daughter has been having severe jerking in her right leg since Nov. 20th and has not stopped, the neurologist has put her on clonodine and xanaflex as well as tylenol3 for pain. she is now on iron pills as well even tho her count was at 33. The neurologist that we seen in the hospital said this is not myoclonus however the other 4 drs that we have seen all agree and say it is. her right leg only jerks when she is awake whether she be sitting laying down or even walking. I have her in physical therapy twice a week and they are saying that her muscles are staying contracted and that her pelvis is now tilted to the left. It was not this way. This is not the first time she has had this jerking in her right leg, she did this 16 months ago but it only lasted for 9 hours. this time it has been 30 days of non stop jerking when she is awake and is now effecting the way she walks. She is in alot of pain and doesnt want to do anything because of this...please help???
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Avatar universal
I have myoclonic jerks in my upper torso, arms, shoulders, neck.  Sometimes it can get so violent and go on for so long that I'm weeping from fatigue. I get some relief from Clonazepam, which I take on an 'as needed' basis.

My myoclonus is due to MS, but I understand it can be caused by a variety of different things.
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Avatar universal
I have had all these symptoms for nearly two years.  
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1253197 tn?1331209110
Like Red I have noticed that this thread started in 2007, but if it has raised its head again it is no bad thing for us newbies.

I think that I have sleep myclonus nand am aware that often just when I am dropping off to sleep that my body jerks in different places and particularly my leg.  All the pieces of the MS puzzle slowly start to fit together...although I think there will always be a few missing as there is still too much to be researched and understood about this horrible condition.
I was going to use a stronger word then as horrible does not convey the right message but last time I did that the higher authorities bleeped them out. Lesson learned.

Sarah
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1312898 tn?1314568133
I have Myoclonus.  There is a good info sheet on the NIH site.  I began having significant Myclonus 8 months ago that continues to increase.  I will sometimes have many per minute to only 2-3 times per hour.  It initially started in the evenings, now it can start when I first get up.  

The movements have been severe at times.

I think that it is a common symptoms in many neurological diseases such as MS.  

OK, I just realized that this thread is years old.    

Red
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Avatar universal
My wife has had MS for 18 years. Her myoclonus did not begin until she STARTED on Requip. Go figure, she had a reaction to an RLS med. She had some minor muscle spasms in her legs before, but now she goes into full blown episodes similar to what others describe when the Requip starts wearing off. If she misses just one dosage, she starts having terrible jerking. We want to get her off of Requip, but it's like her body is addicted to it now. Miss one dose and pay the price! We are in the process of getting the situation resolved and we're trying to wean her down off the Requip. We hope to try some of the meds listed in this thread.
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Avatar universal
am 17 years old and i have action myoclonus,italk to my parents about it but they think that im trying to get attention.i get this weird involuntary muscle movement that starts on my leg and goes uo to my arm and it last for ten seconds or so,i dont really know what to do anymore
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Avatar universal
My wife has myoclonic jerks at night but they involve all muscle groups, legs, face torso, trunk, arms, etc. She would have one twitch after another continuously as she drifted into sleep.  It used to only present as she was falling asleep but two weeks ago it became more intense and lasted all through the night, making it very difficult if not impossible to even sleep. 5 days ago she had a tonic-clonic seizure. Docs at E.R. did ct scan, bloodwork, x-rays, no cause determined. We are currently awaiting results of eeg. can anyone offer ANY information??
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