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Saying good bye to Depakote for JME
Thu, 10/21/2004 - 09:23My husband is 27 and has had JME since he was thirteen. He has been on depakote with excellent control (he only seizes when he forgets his meds, and then has too much to drink.) His seizures are usually full on GTCS and last for 3-4 minutes. He also stuggles so much with attention and weight. I know much of this is because of his meds.
He just saw a new neurologist who recommended either Lamictal or Zonegran. I was hoping I could hear from some people who have had similar decisions and switches.
THanks
Anna
RE: Saying good bye to Depakote for JME
Submitted by uvmalum93 on Mon, 2004-10-04 - 13:32
Anna,
Good luck with your husband. He sounds similar to my situration. I am 33 and have had JME since I was 12. I was on Depakote for about 18 years with excellent control. Side effects were massive weight gain (especially when I reached adulthood) and general sleepiness. I switched to Topamax a little over two years ago. Again, excellent control. I even lost about 90 pounds so I feel much healthier. I am not as tired as I was, but I have some speech/short term memory difficulty. It's not horrible and most people don't notice, but I do and I struggle with it. But it's better than the compound health problems that being heavy brings. I am meeting with my doc. this week to discuss a new therapy. Possibly Zonegran or Keppra. We may decide to stick with the Topamax. He is often reluctant to change a therapy that is working. Especially when a low dose (90mg) is doing the trick. I hope your husband can find an alternative med. I was never much of a heavy drinker (except in college) but quit completely the last time I switched meds. I was nervous about switching and didn't want to interfere with the medicine. Plus I started losing weight almost immediately and liked the results so I didn't need the extra calories. Having JME we are all in this for life so we need to make decisions that affect our overall health long-term and the well being of those around us. My wife truly enjoys the fact that I have much more energy than I ever had. She wouldn't trade that for anything - but if I could find a med that didn't cause weight gain, didn't sedate me, and didn't cause speech problems, then sign me up! I'll keep you posted on what the decision is regarding any changes. Again, good luck to you and your husband. There are definitely options out there if we are willing to risk the change. Keep us informed.
Anna,
Good luck with your husband. He sounds similar to my situration. I am 33 and have had JME since I was 12. I was on Depakote for about 18 years with excellent control. Side effects were massive weight gain (especially when I reached adulthood) and general sleepiness. I switched to Topamax a little over two years ago. Again, excellent control. I even lost about 90 pounds so I feel much healthier. I am not as tired as I was, but I have some speech/short term memory difficulty. It's not horrible and most people don't notice, but I do and I struggle with it. But it's better than the compound health problems that being heavy brings. I am meeting with my doc. this week to discuss a new therapy. Possibly Zonegran or Keppra. We may decide to stick with the Topamax. He is often reluctant to change a therapy that is working. Especially when a low dose (90mg) is doing the trick. I hope your husband can find an alternative med. I was never much of a heavy drinker (except in college) but quit completely the last time I switched meds. I was nervous about switching and didn't want to interfere with the medicine. Plus I started losing weight almost immediately and liked the results so I didn't need the extra calories. Having JME we are all in this for life so we need to make decisions that affect our overall health long-term and the well being of those around us. My wife truly enjoys the fact that I have much more energy than I ever had. She wouldn't trade that for anything - but if I could find a med that didn't cause weight gain, didn't sedate me, and didn't cause speech problems, then sign me up! I'll keep you posted on what the decision is regarding any changes. Again, good luck to you and your husband. There are definitely options out there if we are willing to risk the change. Keep us informed.