The Good, The Bad and the Ugly of Epilepsy Meds

Dan: So I’ve heard that epilepsy medication can be pretty bad and I’ve seen the firsthand the side effects Caitie’s had to deal with.

Caitie: I’ve been on four different kinds of epilepsy meds and I’ve had different reactions to them all. With Clobazam I gained a ton of weight and still had seizures, with Topamax (which I was on for 5.5 years) I lost all the weight I gained and it became really hard to think and stay organized. I had an allergic reaction to Lamotrigine.

Dan: Let’s not forget Keppra which her really angry about everything. And very moody. We’d like to hear your stories about epilepsy medication – good and bad. Join the discussion by posting in the comment section.

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7 comments

  1. In 14 years have been on 13 diff meds. My depakote and depakene were horrible as my mood changed. I had tremors couldnt focus. Keppra gave insane migraines. Topamax by itself made me lose my hair.

  2. I’ve been on just about every med since time began at one time or another. Topamax took my words away, Tegretol made my sodium levels go so low I ended up in the hospital. I gained 100 lbs on Depakote and ended up in the hospital when my nurse practioner put me on a penicillin or cephalosporin for infections. These antibiotics sent my med levels plummeting, so that I had five grand mal seizures in one weekend. I was so out of it I didn’t even feel it when a lumbar puncture was done. I lost a week of my life because of that. I began dropping things and falling all the time because I had been on depakote so long. I went to a new neurologist last August in an effort to find out why I was falling and dropping things all the time. When he gave me the neurological exam where I had to stand toe to heel, i couldn’t balance. It was the depakote- a side effect. I am now on Keppra , which I consider a wonder drug. No more seizures, no more falling! My case is particularly tough because I have bipolar disorder as well. Alot of the anticonvulsent drugs are used for bipolar disorder. Just now, my meds are exactly right. I’m trying to find the right drug to prevent my headaches, but it tips the scale only too slightly so that I become agitated all the time. So, I’ll keep searching for that one . So

    1. I’m glad Keppra works for you. It seems to be a drug that is either FANTASTIC for the patient or HORRIBLE. I was in the latter category but I know tons of people have had good success with Keppra. It just goes to show that there’s no one right treatment plan.

  3. I am new to epilepsy world, my daughter 11 y. o. started having absences seizures 10 month ago. We already have our own negative experience with medications. G-d it’s such a guessing game, let’s try this ops didn’t work. We started with epival, which is not bad and helps 50% to control the seizures, then keppra was added, which made my daughter completely loose her appetite and decrease her ability to chew food (it was just stay in her mouth and get all big ball of dough) and then we got clobazam, which makes her drool big time. With all these medications together she went into catatonic state and now we are gradually taking her off Keppra and clobazam. It hard to watch . So now we have to try either something else or leave it as it is.

    1. Keppra and Clobazam were horrible for me (Caitie). I started the Ketogenic Diet earlier this year and have had only one seizure in the last 4 months!! And I’ve been able to go off all my meds! If you haven’t tried the diet, you might want to look into it. The Charlie Foundation (http://www.charliefoundation.org/) is a great resource. I wish we’d known about the diet before we experimented with all the medications.

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