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SuzetteG

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Hello All! My name is Suzette and I've had epilepsy since I was 13th. I was diagnosed with JME sometime after that, I can't recall exactly when but it took some time for me to find a neurologist that knew what they were looking at. I went through quite a bit before they found a medication that would work for JME and finally put the seizures to rest.
I've been seizure free (tonic-clonic free) since just after Thanksgiving 2005! Topamax is my best friend, I've been taking it since April 2007 and I hope that it continues to work for me. I was finally able to start a family and we have a beautiful little girl who will soon be a year old. :)
It's nice to meet all of you!
 
Welcome SuzetteG

You are so lucky to have found the right med that works for you.

You say you're tonic/clonic free. Does that mean that you still get partial seizures or are you seizure free?

Meanwhile make yourself at home, the people here are very helpful & supportive.
 
I have JME also, and went through one idiot neurologist, then found a good one. Glad to hear your doing well.

Alex
 
epileric said:
You are so lucky to have found the right med that works for you.

You say you're tonic/clonic free. Does that mean that you still get partial seizures or are you seizure free?

Meanwhile make yourself at home, the people here are very helpful & supportive.
Click to expand...

I've had a couple of the Myoclonic seizures (ticks) here and there. A handful, maybe 10 or so, since 2005. Other than that, I've had maybe 2 or 3 of the Absence seizures and I haven't had any of the wandering seizures (completely out of character for JME) since my teens. (I'm 31 now.)

It took going through four or five different meds to get me to the right medication. Phenobarbitol did a number on me, badly. I am counting my blessings that Topamax is working and hoping that I don't have to switch anymore. Thank you! :)
 
VintageRacer said:
I have JME also, and went through one idiot neurologist, then found a good one. Glad to hear your doing well.

Alex
Click to expand...

Thanks! I've been to at least two of the idiots myself. The first one was the very first neuro that I saw. He swore that I just had a "tick" and that it would go away. When it didn't and it developed into full blown seizures, he didn't do any tests... just wrote a script for Phenobarbitol. That drug and my chemistry don't get along at all. I hope you're doing well!
 
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