Looking for recommendations for anti-seizure drug

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Looking for recommendations for anti-seizure drug

by BogieMon on Wed Jul 29, 2015 07:35 PM

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My dad is battling GBM. His radiologist wants him to see a neurologist so he can be put on an anti-seizure medicine to treat one of his physical problems (mainly a severe tremor in his right arm and leg). He has never had a seizure.He 's on the 5/23 Temodar regimen and is taking .75 daily dose of a steroid to get swelling under control. We hope the right anti-seizure medicine would allow us to go even lower with the steroid dose or perhaps do away with it all together. I know lots of the GBM patients on this board take anti-seizure medicine. Which would you recommend? I've heard good things about Kepra. Which would you avoid? I've heard some bad things about Topamax. Any suggestions would be appreciated.

RE: Looking for recommendations for anti-seizure drug

by tjsadowski on Wed Jul 29, 2015 11:09 PM

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I was diagnosed with GBM in 1999 and have been on seizure Meds pretty much since then. I have been on about six different ones over the years. I was on Keppra for a while. One issue was with the generic. Some versions could be too strong or too weak and one version left me feeling out of it. Not sure if that is still an issue. I have been on Trileptal quite a while one. It is well tolerated and I have not had any seizures. Some seizure Meds may also lower your white count.

RE: Looking for recommendations for anti-seizure drug

by Bee_Rich on Thu Jul 30, 2015 03:44 AM

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get a refferal to a nuerologist that specializes in seizures, aka epileptologist.My epi is in the top 3 of all my care providers, and ALL of my meds get run by her first. Even my neuro-oncologist defers to her with my seizure/tremor meds. where  are you located, she might give recommendations

RE: Looking for recommendations for anti-seizure drug

by nvand1993 on Thu Jul 30, 2015 12:34 PM

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Hey Bogiemon,

My mother has just but weened off all her seizure meds, as the tumors have shrunk after gamma knife radiation.

The neurologists had her monitored until they found the correct dose, which ended up being 2000mg keppra twice a day and 200mg of Vimpat twice a day.  Let me tell you, my mother was in a fog with those doses and had to take provigil to help wake her up.  Both medications work very well and completely controlled the tremors she had on her left side.

Hope this helps, and hope you can have a smaller dose than this to control your dad's tremors.

Nicole

RE: Looking for recommendations for anti-seizure drug

by BogieMon on Thu Jul 30, 2015 01:52 PM

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Bee Rich, we are in West Tennessee. He is receiving treatment in Jackson, Tennessee, at the Kirkland Cancer Center. The neurological center is actually in the same building as the cancer center.
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