Back on my wonder drug

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mspang

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Here's a decent size story about my epilepsy. Back in 1990 at the end of my sophmore year in high school, I developed a brain abcess that was caused from a sinus infection. After successful surgery my surgeon was almost positive i'd start having seizures in a few years because of scar tissue. Well 3 years later in 1993 while driving my car, I got into a mild wreck after having my first seizure. A miracle my vehicle just went off the side of the road while I went unconscious. From then on I was unable to drive again until I found a great neurologist who put me on a drug called Felbatol in 1997 which put my seizures in remission. Unfortunately though this remission only lasted until 2000 without me having any seizures because I had to move out of state. Once I found another new neurologist I was immediately taken off of the Felbatol once he found out I was taking it. The reason being it causes aplastic anemia and another problem in a small percentage of people. Since not knowing about medication I did what he told me and unfortunately got off of it. So in place of the wonder drug the neurologist put me on a decent drug called Lamictal. This one though didn't completely get rid of the seizures as they did come back, but not as bad as they were before the remission. Well seven years down the road in 2007 I started with the grand mal seizure, the worst! Eventually got so irritating having seizures every two weeks, I had the Vagus Nerve Stimulator implanted in 2008 with not much success. Then in 2009 I had unsuccessful brain surgery to remove scar tissue as it was to late for surgeons to remove it. So the only thing left for me was the wonder drug Felbatol which I had no choice taking again. This time though the wonder drug hasn't put my seizures in remission like last time, but its still doing a wonderful job! I rarely now have any seizures, maybe one to three every six months, and when I do their now only when i'm sleeping. Which is totally awesome!
 
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Welcome to the forum!

I'm so sorry to hear about your abscess, and the failed surgery. I am so glad the Felbatol is working for you. I'm sorry, though, that you continue to have seizures. Are they partial or generalized? Do they still affect your ability to drive?

Out of curiosity, has your neuro tried you on any drugs other than Felbatol and Lamictal? There are so many out there, including many new ones that some people have had great success with.
 
Hi mspang, welcome to CWE!

It sounds like you've been through a lot in the name of finding a treatment. It's good that you've achieved some measure of seizure control, but as Endless says there's always the possibility that you could do even better on another drug. Since your seizures happen at night, have you had a sleep study to see if there are any issues (like apnea) that might be contributing to your seizures?

Best,
Nakamova
 
Hi Endless- To answer your questions. I still have the grand mal seizure, but no where near as bad as they used to be and now they only occur usually when I become stressed. Seizures no longer affect my ability to drive as I now only have them at night. And I believe i've been on every epilepsy medication that's why I ended up having the VNS implanted and brain surgery.
Do you have epilespy? Thanks for the welcome!


Hi Nakamova- Like I mentioned to Endless, I believe most of the time my seizures are stress related. So that's what causes the seizures in my sleep.
As I asked Endless do you have epilepsy? Thanks for the welcome 2!
 
Yes, I have epilepsy. I had grand mal seizures out of the blue eleven years ago when I was 35. Currently my seizures are completely controlled by Lamictal.
 
Nakamova,

Definitely great to hear you have your seizures controlled with Lamictal. I never got off of that drug I just added Felbatol along with it to have my seizures almost completely controlled again. Very sorry to hear how you ended up with seizures!
 
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To answer your question, yep, I have epilepsy, now mostly controlled on Lamictal.
 
Endless,

As we all know epilepsy sucks! Sorry to hear that you have it, but happy for you that you have it mostly controlled on Lamictal.
 
To answer your question, yep, I have epilepsy, now mostly controlled on Lamictal.
I was wondering endless I'm on lamictal too, do you have any major symptoms that you can't stand such as dizziness and double vision?? and also memory loss?? thanks let me know :)
gabbyg2000
 
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