Quote:
Originally Posted by Hummingbird1950
Hi unaluna ~ Very interesting and thank you for sharing this with me. So, until you got on Topomax you were experiencing abnormal movements occasionally? Did this stop after Topomax? Have you had an EEG done and did it show you have a seizure disorder? I have never heard of this type of seizure disorder, but just looked it up and it's part of partial simple focal seizure disorder. I have jerking movements only in my arms occasionally.
Birdie
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Hi Birdie-
Yes, i googled and googled until i found a match. It happened all thru childhood and adulthood. I used to call it "my shiver". I didnt really make the connection myself until my topamax was decreased and the shiver returned a couple of times. My mother saw it and said, whats that?! Its funny, it was always exactly the same, and so were peoples reactions.
I havent experienced the shiver now in almost 20 years since ive been on topamax, except for that breakthru time. I have talked to drs about it, but theyre like, if it aint broke, dont break it for the sake of finding out what it is! No sense in risking a seizure.