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Long time reader, first time poster

Wed, 11/23/2016 - 13:16
Hi All, I've frequented this forum for a while now and finally decided to break my silence. When I was a kid, around 13 y/o or so, I had my first seizure. It was at night and it was a partial that became a full tonic-clonic. I went onto Tegretol and it promptly shut my liver down. All of my tests came back clear. EEG, CT, MRI, and even a week visit to the Harborview Clinic in Seattle gave us nothing to go on. Dilantin and Neurontin, after some time working on the dose eventually stopped my seizures. This was from 13-18. I count myself as a fairly lucky case, I guess? I had eight seizures during that period of time. I eventually stopped taking the Dilantin and Neurontin and honestly thought I had out grown the condition. In my twenties I did all that "living" I thought I'd never "get to do." I drank, I smoked, I smoked Marijuana. I drank caffeine, I wrecked my sleep schedule and nothing ever affected my epileptic past. I lost both of my parents to Cancer and went through the stress and sadness of that and still never triggered a thing. Fast forward to about 7 months ago. I was 35 at the time last May when I had another seizure. I shot out of bed like a rocket and proceeded to have a partial seizure (starting on my left side) and then I blacked out and had a tonic-clonic, much like the ones I had when I was younger. I was immediately put on Keppra and the Doctor was excited because it's "so much better than Dilantin and Neurontin" and this, that, and the other thing. Again my CT Scan and EEG were normal (I'm still waiting for an MRI, but I expect it'll be the same thing.) Anyway, the Keppra kept me from having another seizure for six months. I went from 500mg twice a day to 750mg twice a day. Thought I had it licked. Sure the side effects were shit, but it seemed like after three weeks I was out from under the depression and felt pretty good. Then boom, two days from my six month anniversary I had a seizure. I had smoked some Marijuana that night so I thought I might have done it to myself. The neurologist increased my dose to 1000mg twice a day of the Keppra and I knocked it off with the Marijuana. Then thirteen days later I had another seizure. Same thing, partial then tonic-clonic. Again, increased the dose to 1500mg twice a day. This time I quit smoking cigarettes. I felt like I may have triggered the seizure by smoking too many cigarettes. (It's tough to find concrete information as to whether or not cigarettes trigger seizures for sure) Eighteen days after upping the dose and quitting the cigarettes, I had another seizure. Now I'm at 2000mg of Keppra in the morning and 1500mg at night. I'm going to see my Neurologist on the 30th of this month to discuss what to do next. (I'm 6'5" and 250lbs so they're convinced I can handle the dose.) I think it's been particularly rough for me simply because I have to keep upping this dose of Keppra and with every upping of the dose, I get sent back to unhappy-land. I guess my biggest questions are: Has anyone else dealt with this kind of remission/relapse? Has anyone else dealt with Keppra working and then magically not working? Is it possible to build a tolerance to this drug? Also, should I take the fact that I required polytherapy previously as a sign that it might again be the answer? Ultimately, thanks to those of you who have read this. I really just needed an opportunity to open up about this and I'm a writer, so this is pretty much my way of getting these feelings out. Thanks, John

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