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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 mom doubtful on Sun, 2011-01-09 - 01:48
HI I am new here. My son had some small jerky movement in his hands I noticed. I noticed it lot of times, then we saw a neuro and he ordered eeg... etc then diagnosed him with Myoclonis seizure. and prescribed him Zonegran. this happened when he was 6 yr old.
After some years of giving him that, the docs just tells me to continue forever, got frustrated, Since i dint see any movements, i slooooooowly stopped the med.
now after 2 yrs of not having meds, and not having any movements, now i am seeing it again!! so frustrated to go back to meds forever... what should i do??now he is 10 yr old.
I am not been able to find anyone with this problem. where can i find pple with same problem??
pls help!! any advise would be so thankful.
HI I am new here. My son had some small jerky movement in his hands I noticed. I noticed it lot of times, then we saw a neuro and he ordered eeg... etc then diagnosed him with Myoclonis seizure. and prescribed him Zonegran. this happened when he was 6 yr old.
After some years of giving him that, the docs just tells me to continue forever, got frustrated, Since i dint see any movements, i slooooooowly stopped the med.
now after 2 yrs of not having meds, and not having any movements, now i am seeing it again!! so frustrated to go back to meds forever... what should i do??now he is 10 yr old.
I am not been able to find anyone with this problem. where can i find pple with same problem??
pls help!! any advise would be so thankful.
Re: Myoclonic jerks occuring in the evening?
Submitted by bsomethingsweet on Wed, 2011-03-16 - 07:57
hey there
i was also diagnosed with JME when i was 14, im 20 now. my seizures only happen about once or twice a year, always around this time of year in the cooler months for some reason. mine only ever happen at night either in my sleep or if im woken from a deep sleep and then go back to bed. i was also on lamictal now on lamictrogine (much cheaper.. lamictal is expensive as hell as im sure you know) the only real way to help is to get as much sleep as possible and ive found that eating a lot of fresh fruits and veggies helps cutting out a lot of sweets.. not all, just some if you have a sweet tooth. make sure you take your meds as close to 12 hours apart as possible, and my doc has me taking folic acid vitamins.. which seemed to improve my situation in a minor way, yet still helping..
it is very hard for me to explain feelings to certain people.. if you ever want to talk about weird feelings you may get, we may have similar feelings and be able to talk about it, my feelings send me into temporary depression.
thanks
hey there
i was also diagnosed with JME when i was 14, im 20 now. my seizures only happen about once or twice a year, always around this time of year in the cooler months for some reason. mine only ever happen at night either in my sleep or if im woken from a deep sleep and then go back to bed. i was also on lamictal now on lamictrogine (much cheaper.. lamictal is expensive as hell as im sure you know) the only real way to help is to get as much sleep as possible and ive found that eating a lot of fresh fruits and veggies helps cutting out a lot of sweets.. not all, just some if you have a sweet tooth. make sure you take your meds as close to 12 hours apart as possible, and my doc has me taking folic acid vitamins.. which seemed to improve my situation in a minor way, yet still helping..
it is very hard for me to explain feelings to certain people.. if you ever want to talk about weird feelings you may get, we may have similar feelings and be able to talk about it, my feelings send me into temporary depression.
thanks
Re: Myoclonic jerks occuring in the evening?
Submitted by teener on Sun, 2011-01-02 - 22:08
So happy I was reminded of this thread. I last posted on it in october of '09, and just past a full year year later they came back. Later in the evening those night time jerks. Didn't even bother going back to the neuro this time, just let it work itself out. They went away after two weeks, but sometimes I feel like its going to happen again. So weird.
All the best, Christine
So happy I was reminded of this thread. I last posted on it in october of '09, and just past a full year year later they came back. Later in the evening those night time jerks. Didn't even bother going back to the neuro this time, just let it work itself out. They went away after two weeks, but sometimes I feel like its going to happen again. So weird.
All the best, Christine