Hello out there

[Nakamova]

I'm new to this forum. Here's my scoop: Forty yrs.old, based in Cambridge, Massachusetts. First seizures in 1999, at which time I was put on Dilantin. I'm now on a 200mg/day, which may seem low for others, but is more than plenty for me....

[lindy]

Nice to meet you! I'm sort of in your neck of the woods (southeastern VT). Been seizure drug free for five years now. Tried the drug routine for more than 20 years and things were just getting worse. Now I'm as seizure free as I've been since I was 11 (and I'm now 52) - 16 months since my last grand mal - 23 months between seizures then.

[Birdbomb]

Greetings!

Welcome to crew. You'll find some really nice and informative folks here.

[Nakamova]

Hi Lindy,

I'm so glad to hear that you are both seizure- and drug-free. My biggest beef with my neurologist is that she can only offer me different kinds of drugs, as opposed to a strategy for getting off them altogether.

Questions: How slowly did you taper off the drugs? Did you have any seizures during the tapering process? I plan to take a drug holiday this October, so I'm curious about other folks' experience with this.

[lindy]

I weaned myself off of Depakote against medical advice. By then, I had been weaned off of and slowly increased on so many drugs, I could wean myself without thinking about it. Did it over 8 weeks - no seizures. Why are you going on a "drug holiday"? Are you taking yourself off permanently or just taking a break? If it works for you, why are you stopping?

[Nakamova]

I'm planning a drug holiday, because while the Dilantin "works", it also makes me feel quite weary, and I gain weight. My current neurologist would like me to try Lamictal, in part because she is very anti-Dilantin, and also because she feels the Lamictal might have different or "better" side effects. I've agreed to consider it, but I would like to see what it feels like to be drug-free first. I'm not bothered by the idea of having a seizure, for me it's a toss-up between the seizures and the side-effects of anti-epileptic drugs.

[Bernard]

Hi Nakamova, welcome to our forum! Glad you popped in from the NSE(UK) forum.

Stacy managed 4 years seizure and drug free before we started having kids. You can read all about her story from the link at the bottom of the page.

She is currently taking 300 mg Dilantin and seems to have the seizures controlled. She is also using LENS neurofeedback. We expect to get her back to a seizure and drug free state again.