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juvenile myolclonic epilepsy - drug therapies

Sat, 01/16/2016 - 11:27

My husband was diagnosised 20 years ago with JME.  He has always been on Depakote (a high dose).  Over the years he used Lamictal as a secondary drug (about 7 years), Keppra briefly and now Topomax (about 7 years).  He is having myoclonic siezures about 5 mornings a week. Severe enough to disrupt his day - exhausted and sluggish.  The side effects of the depakote also seem to be getting worse.  We were always told that Depakote was the drug of choice for JME.  Has anyone had success with any other drug therapies?  We are also looking for am Epiletologist in the Northeast that has an interest in JME.  Does anyone have any suggestions?  We are willing to travel.

Any crumb of information would be most appreciated!

Comments

depacote came out in the 1980

Submitted by just_joe on Sat, 2016-01-16 - 13:04
depacote came out in the 1980's and was good. Depending on the neurologist would also depend on what the drug of choice is today. This site can give you the neurologists and where they preside or work. In the get help section one of the parts in "Find a Doctor" go there and enter your zip code and you will find what you need. There are many different medications that are and have been used for seizure control. In every visit with the neurologist always sak questions. That is the way I go more results and my seizures are now seconds long. A seizure lasting 2-4 seconds I have no problem with. Is this the best medication for my seizures? Are there other procedures that can help get better control of my seizures? Simple questions and to the point. I got answers and medications that got my seizure count down and now shorter seizures, I hope this helps Joe

I have JME and I'm on

Submitted by molly322 on Sun, 2017-01-29 - 23:38
I have JME and I'm on extended release Lamogitrine with could results.  I also live in the Northeast and have found a neuro that I adore at Beth Israel Deaconess in Boston.  I've been seeing her since 2001 and she is a god-send!  (Dr. Babu Krishnamurthy)

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