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JME - Seizures getting worse
Wed, 12/01/2004 - 09:19Comments
RE: JME - Seizures getting worse
Submitted by Willsmom on Sun, 2004-11-28 - 09:14
RE: JME - Seizures getting worse
Submitted by sjones on Sun, 2004-11-28 - 17:07
Hi there,
My husband also has JME and is 29. He is currently on Lamictal and Klonopin. The Klonopin has reallly seemed to help stop his tonic-clonic seizures. He's been on Lamitcal for the past five years and was just recently weaned off of Carbatrol. (He was put on Carbatrol/Tegretol when he was a teenager before he was diagnosed with JME in his mid-twenties.) He can't take Depakote because of an allergic reaction to it. The Klonopin was started this summer after his neuro consulted with a visiting epileptologist.
My husband also seems to go through periods of seizure free activity and then through periods of clusters. He went for 1 year with no seizures and then had maybe three in two months. I know that's not like having 5 in a month and I'm sure that must be incredibly stressful for both of you. Hopefully, the doctors at Vandy can get everthing worked out for him. Does he seem to have a lot of the myoclonic jerks preceding his grand mals? I'm not sure about Keppra, but our understanding is that the Klonopin really helps stop the myoclonic jerks, which helps stop the TCS.
Good luck!
Sarah
Hi there,
My husband also has JME and is 29. He is currently on Lamictal and Klonopin. The Klonopin has reallly seemed to help stop his tonic-clonic seizures. He's been on Lamitcal for the past five years and was just recently weaned off of Carbatrol. (He was put on Carbatrol/Tegretol when he was a teenager before he was diagnosed with JME in his mid-twenties.) He can't take Depakote because of an allergic reaction to it. The Klonopin was started this summer after his neuro consulted with a visiting epileptologist.
My husband also seems to go through periods of seizure free activity and then through periods of clusters. He went for 1 year with no seizures and then had maybe three in two months. I know that's not like having 5 in a month and I'm sure that must be incredibly stressful for both of you. Hopefully, the doctors at Vandy can get everthing worked out for him. Does he seem to have a lot of the myoclonic jerks preceding his grand mals? I'm not sure about Keppra, but our understanding is that the Klonopin really helps stop the myoclonic jerks, which helps stop the TCS.
Good luck!
Sarah
RE: JME - Seizures getting worse
Submitted by Belinda on Sat, 2004-11-27 - 14:59
I know all about seizures getting worse.My seizures been getting worse for months.I'll be 43 next month.I was diagnosed when I was two.I have (Tonic-clonic,Absence,Atonic,Complex-parial) I know all about dislocating the shoulder I did that twice in 4 mths one year.He's lucky he can take Keppra and Lamictal I'm allergic to them.There are 27 different medsI've taken 18 of them.I'm trying Sabril next.I've seen more epileptologist.I've been to Montreal,NIH,Medical college of Georgia,Emory in Atlanta.I don't how many times.It's the closest that's were my VNSdoc is.My neurologist is in Atlanta. Belinda