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Myoclonic jerks occuring in the evening?
Thu, 11/01/2007 - 13:10Comments
Re: Myoclonic jerks occuring in the evening?
Submitted by usafbratt on Sat, 2008-06-14 - 19:52
I am sorry to hear about your daughter and I hope she is doing okay. Does she have any developmental disabilities?
Hello my daughter does the exact same thing as your daughter. She has refractory complex partial and generalized seizures. I noticed recently when she was sleeping she would have these movements that looks like twitching and shrugging her shoulder/s. Sometimes her shoulders and arms will jump up inches off her body. Sometimes it would happen 1 or 2 times in a row sometimes up to 10-15 times rhythmically. Sometimes it's both arms and sometimes it's 1. Sometimes it's the fingers, head or the face (eyes, mouth, cheeks) and sometimes it starts with the fingers then goes to the arm then head and other arm. I have even seen her stomach twitch. Sometimes they arouse her to make her turn over. Then it's like they start all over again. My daughter also has them anywhere from 1 sec. to a few seconds to 1 minute to a couple of minutes apart. On occasion they are a few hours apart. It is almost like her body is always doing something. Does the same sort of thing happen to your daughter? I have been video taping her while she sleeps and her pedi neuro said she had Myoclonic jerks, but didn't feel like they were seizures. She said they are moving every second and that wasn't fast enough to be a seizure. My taping wasn't that good I showed her on a 3" screen. So I don't think she saw it that good. I am confused as to why this is happening she wakes up with real bad headaches. She is on 5 different seizure med and at high doses. Carbatrol XR 1600mg a day, Lamictal 800mg a day just dropped to 400mg a day, Phenobarb 194.4 mg at bed, Topamax 400mg a day, and just added Depakote 500mg a day. Any thoughts would be greatly appreciated. Thank you.
I am sorry to hear about your daughter and I hope she is doing okay. Does she have any developmental disabilities?
Hello my daughter does the exact same thing as your daughter. She has refractory complex partial and generalized seizures. I noticed recently when she was sleeping she would have these movements that looks like twitching and shrugging her shoulder/s. Sometimes her shoulders and arms will jump up inches off her body. Sometimes it would happen 1 or 2 times in a row sometimes up to 10-15 times rhythmically. Sometimes it's both arms and sometimes it's 1. Sometimes it's the fingers, head or the face (eyes, mouth, cheeks) and sometimes it starts with the fingers then goes to the arm then head and other arm. I have even seen her stomach twitch. Sometimes they arouse her to make her turn over. Then it's like they start all over again. My daughter also has them anywhere from 1 sec. to a few seconds to 1 minute to a couple of minutes apart. On occasion they are a few hours apart. It is almost like her body is always doing something. Does the same sort of thing happen to your daughter? I have been video taping her while she sleeps and her pedi neuro said she had Myoclonic jerks, but didn't feel like they were seizures. She said they are moving every second and that wasn't fast enough to be a seizure. My taping wasn't that good I showed her on a 3" screen. So I don't think she saw it that good. I am confused as to why this is happening she wakes up with real bad headaches. She is on 5 different seizure med and at high doses. Carbatrol XR 1600mg a day, Lamictal 800mg a day just dropped to 400mg a day, Phenobarb 194.4 mg at bed, Topamax 400mg a day, and just added Depakote 500mg a day. Any thoughts would be greatly appreciated. Thank you.
Re: Myoclonic jerks occuring in the evening?
Submitted by sheltielover on Mon, 2008-09-29 - 01:36
I get myoclonic jerks all day long and worse in the AM and late at night. They are also noticeably worse around ovulation and menstruation (as are my seizures). I take Klonopin at night to help control them, and I am finally getting a good night's sleep on a more regular basis. I am also on Topamax (350 mg) to help control my simple partials, and it has helped the myoclonic jerks *a lot*. The Klonopin (which is both an anti-seizure and an anti-anxiety med) is particularly good at helping with myoclonus. I take .25 mg on most days and .5 mg on bad days. Hope this helps someone. I can't stop thanking the person who suggested I ask my neuro about it!
Best,
SL
I get myoclonic jerks all day long and worse in the AM and late at night. They are also noticeably worse around ovulation and menstruation (as are my seizures). I take Klonopin at night to help control them, and I am finally getting a good night's sleep on a more regular basis. I am also on Topamax (350 mg) to help control my simple partials, and it has helped the myoclonic jerks *a lot*. The Klonopin (which is both an anti-seizure and an anti-anxiety med) is particularly good at helping with myoclonus. I take .25 mg on most days and .5 mg on bad days. Hope this helps someone. I can't stop thanking the person who suggested I ask my neuro about it!
Best,
SL
Re: Myoclonic jerks occuring in the evening?
Submitted by starchild262002 on Tue, 2008-03-11 - 13:50
My daughter jerks all throughout her sleep. From the moment she falls asleep until the time she wakes up. I had spoke to her spec. about it and they gave her a week long EEG, which I had to press a button everytime she moved. It occurs every minute. After them coming in the room every minute, the first night they told me to stop pushing the button. They told me that she was showing seizure activities but the meds she is on, trilepital, was preventing them from happening. They just put it on the back burner, they suggested if I really wanted to know what was happening that we would have to do a more extensice EEG and to have the electrodes in her brain. i was not up for that, so we have to rely on the meds she is on now. but she still continues with the jerks during her sleep.