Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Frisium/Clobazam + other issues
Tue, 05/06/2014 - 15:42So I am likely going to be starting Frisium after an EMU stay sometime soon. My doctor said he has to get approval for the drug first. They are hoping to taper my Depakote in the unit, but I hate the stuff anyway. It's caused me to gain a lot of weight. Does anyone have any experience with the drug? I know it wasn't really available here in the U.S. for a while, but my doctor feels confident it will work.
(I also have a VNS.)
About 10 days ago, I had my normal partial-seizure experience. Apparently, I also had two generalized, full-body seizures in between. They lasted anywhere from five to 20 seconds (fiancee, who was there to see it, can't really remember the accurate time). I don't remember them, of course. My seizures are mostly partial.
I guess I am just wondering about a) the Frisium, and how it works for people; and b) how people deal with having generalized seizures they don't remember. They were very short, but I also feel bad that my fiancee had to see them. She is a rock, though, and I love her dearly. :D
It is used mainly as an add
Submitted by Anonymous on Tue, 2014-05-06 - 18:07
It is used mainly as an add-on medication for primary generalized and partial seizures but it may also be effective when used alone. - Your neurologist may need to get the medication from another country where it is already approved and being used. There are side efects and you might find some posts but it is not available here in the states because the FDA hasn't approved it here yet. Side effects do happen with any and all medications. Generally they happen to 5-8% of the people taking it so 92-95% of the people taking it have no problems As for medications making people gain a lot of weight there are several that make people taking it retain water. I was on one of them and I went from 185 to 265 in less then 3 months. My neurologist had informed me of that issue. The medications didn't control my seizures likwe we thought it would so we switched to another and I lost 30 lbs in 1 month. Doc said it was not all water tho since I was wanting to lose weight and I had been exercising. I hope this helps and the medication works well Joe