Anyone here have JME??

Hi,

I just wanted to see who all has JME, what meds they are on, for how long, what bothers you the most about this annoying syndrome, what age were you when it was diagnosed, did you have to do any time in the EMU, Anyone else in your family have it (it is genetic).

I was on Tegretol for 3 years before they finally removed it and the Topamax.

After them 2 week stint in the EMU last year, they sent me home with Depakote, within the last month, recently, I was swithed over from regular Depakote to Depakote ER, and left the Neurontin alone.

I still have some Myoclonics, but not like I did before they put me on the Depakote.

Tegretol makes the Myoclonic jerks worse, and isn't usually given to people who suffer from this so who knows why they did it.

My Absences are still there a little, but a lot better than last year at this time.

The Grand Mals are the ones I am worried about, because nothing that has been done stops it, and surgery can not be done on someone with generalized seizures as a rule.

They especially couldn't do one on someone who has a nasty collection of generalized seizures, like I do.

I take Neurontin-3600 mgs, and 1500 mgs of Depakote ER.

They were able to catch the Absences in action by making me hyperventilate.

The rest of the time it just showed generalized spikes and waves, and burst-supression activity.

They are taking a guess with the history that my mom gave from when I was a kids through high school, that this started at 13 years old. 

I wet the bed until I was 14 or 15.  It was from undiagnosed and untreated seizures.

So, I was never treated like I should have been.  But the theory goes---if epilepsy isn't teated, hard to control seizures may continue through out a person's life.

Nancy