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JME - Seizures getting worse

Wed, 12/01/2004 - 09:19

Topic: Family & Friends

I am new to this site. My husband was diagnosed with JME when he was 13. Until recently (he's 29 now), he's averaged about one tonic-clonic (grand mal) seizure about every 15 months. However, in the past 2 years his seizures have gotten much worse. In the past month he's had 5 morning GM seizures. He's even dislocated his shoulder during 3 of them. He's never had this frequent or violent seizure activity. He's been on about every med in the book - right now he's on Lamictal and Keppra - obviously it's not working. We are seeing specialists at Vanderbilt Univ. to get this matter resolved. But, just wondering if anyone else out there has experienced anything like this.

Comments

RE: RE: JME - Seizures getting worse

Submitted by akelton on Wed, 2004-12-01 - 09:19

Thanks for all of the information. We are up to 6 seizures, 3 shoulder dislocations, a pulled groin muscle, and basically a beat up body since Oct 26. It's truly amazing what the body will do to you and how NOT in control you truly are. The doctor put him on 200mg of Topamax 2x day immediately. We are expecting some very bad side effects but decided that the side effects are better than the seizures for now. Anyone else been put on a high dose of Topamax like this - instead of a gradual increase? What did you experience?

RE: JME - Seizures getting worse

Submitted by jennamay on Mon, 2004-11-29 - 10:53

You may find the following links below useful.

http://www.epilepsy.com/articles/ar_1068582353.html

http://www.epilepsy.com/articles/ar_1063677631.html

Best Wishes,

Epilepsy.com Staff

You may find the following links below useful.

http://www.epilepsy.com/articles/ar_1068582353.html

http://www.epilepsy.com/articles/ar_1063677631.html

Best Wishes,

Epilepsy.com Staff

RE: JME - Seizures getting worse

Submitted by Christina on Mon, 2004-11-29 - 14:38

Hi everyone. I am brand new to this site ( 5 minutes.) I am dating someone who has just had his first seizure ever and I was there for it. It was traumatic for me and very scary. He has no recollection of it. Based on testing a reading it appears it was clonic-tonic. He's only 29 years old and there's no history in his family of anything like this. Im terrified it will happen again. We are waiting for his MRI to come back.

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