[epilepsy] Re: Guinea pigs.

Tuesday, June 9, 2009

[epilepsy] Re: Guinea pigs.

Hey Tim,

You aren't alone! 25% of us with epilepsy don't have our seizures under control. So don't feel alone! Like you I started on Pheno and Dilantin back in 1975. Started seeing a nuero in 1988. He switched to Tegretol and in time tried Neurontin. Then in time looked and felt like a zombie and told him I needed to get off. He showed me new liturature about a new med. called Keppra, been on it ever since. Switched from Tegretol to Trileptal and have been on that since that switch. I swithed from a neuro to epileptologist and my first vist to him he brought up surgery which my neuro. said I couldn't have. Well, 10 months after seeing the epileptologist, had a left temporol lobectomy and have been seizure free since. Driving again after 20 years not driving! If it wasn't for my idiot neuro retiring, I would still be having seizures!!!!!!! Gosh does my blood boil when I think of that idiot! But, my new Dr. brought up surgery on my first vist simply asking me questions as he looked at my last MRI and EEG!!!!! Amazing how each Dr. is so so different! If I only had tried another Dr. rather than trust what my one Dr. said! That taught me not to simply trust one Drs. opinion! Tim, you aren't alone, like I said, 25% of us with epilepsy can't keep our seizures under control. Tim, have you ever looked into surgery? Take care, keep a smile on your face!

Another guinea pig (smile)

--- In epilepsy@yahoogroups.com, TIMOTHY BALDWIN <tbb1@...> wrote:
>
>
> I've felt like a Guinea Pig since 1980, I was diagnosed with epilepsy in '74 but was on Dilantin & phenobarbital until visit to a neurologist then it changed. The pheno. was removed and after awail the dilantin was changed to Tegretol then Carbatal, Lyrica, Keppra, Neurontin, Tegretol XR, Topamax, Trileptal, Zonagran and lacosamide etc.. There has aways been changes in dosage of one medicine or another was being added to it to increase it along. For many years I was on three at once, now its only two Lyrica & lacosamide and a different neurologist. I hope that none of you have been though this, and still don't have complete control. I had my best before ever seeing my first neurologist in '80 but maybe I was only lucky before I visited Guinea.
>

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