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New to all of this!

Fri, 08/31/2018 - 14:31
Hi. I am new here, and new to epilepsy in general. Earlier this year, my 19 year old daughter was diagnosed with JME. It probably surfaced about 3 years earlier. A couple years ago, she randomly asked me "hey Mom, when you first wake up and you're tired, do you get weird muscle twitches?" I was like "no, that's weird" and I thought she meant Charlie horses or something like that. I didn't think anything of it, and she didn't seem too bothered or alarmed. Fast forward to April this year. She was helping me change the water for our new baby chickens, and she was staring ahead but dumping out the container, she rotated it twice -like a back and forth motion. I thought she was looking to see how much water was left in it, so I was like "Hey! you're pouring the water on me! What are you doing!" Then she stopped and said "oh it was just one of those twitches". I said but why didn't you answer me. She then said the scariest thing. "because when the twitches happen I can't really comprehend what you're saying and I can't say anything either until it stops" I was dumbfounded! I had no idea, and she didn't realize that this was basically a seizure. So needless to say, after a trip to our primary and then a neurologist - an MRI and 2 EEGs later, it was confirmed she has generalized JME. I was ignorant of the different types of epilepsy until this and kind of still letting it all sink in. She is on Lamictal and doing well but I still sometimes worry about the future. Since any brain disorder is so unpredictable, and more research is needed - I sometimes feel lost. Her neurologist is wonderful and thorough -answering any questions we have, but even doctors don't have all the answers. Anyway, thanks for reading this long post. I know you guys here can understand how I feel .:-)

Comments

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Submitted by just_joe on Sat, 2018-09-01 - 14:21
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