Hey guys I been in recovery for a year and a half now. My doctor doesn’t want to lower my medication because I am still having seizures. I got put on a third medication for seizures and I’m a little worried. I wonder if I’ll ever get back to normal. Will I ever get off of medications. I just got put on trileptal 600mg. Has anyone ever been on it? I take 2000mg of keppra in the morning and night and 100mg of toppamax in the morning and night too. I don’t know what to expect anymore.

Hi Veronica,

Sadly, as you are discovering, there's not a fast or easy road to stop taking anti-S meds. The good news is there are gobs of different meds that might work for you, but the bad news is some of them have not so good side effects.

Our son, who had epilepsy, but no AVM, tried all kinds and combinations of meds to stop his seizures. Nothing was working. He finally went in for invasive testing, and they found where his hot spot was, found it was not in a critical area, and surgically removed it about 6 yrs ago. He's still on meds, but trying to ween off following EEGs.

When it comes to S meds, what works for one won't work for another person. It's a long slow process, but hang in there.

Best wishes,
Ron, KS

Hi Veronica. Is your doctor a seizure specialist? Every neurologist claime to be one but not quite true.

Veronica...I see a neuro seizure doctor. I'm on Keppra, 1,000 in AM and 1,000 at night only. But the BEST member who finally found the right medication is Lesley from Australia...

When I had my bleed, I was told that if the seizures didn't stop after 2 years, I would be taken the med for the rest of my life. To me, taking the med for the rest of my life is just fine with me if he keeps me from having seizures.

Stay Strong and Positive!

Hey Barbara that is a good question. I been going through neurologist. Each neurologist is different but each one thinks I have epilepsy now. My AVM was in a seizure prone area which doesn’t help me. I really want to get off my meds but I don’t think that will happen. I believe I will be on meds for the rest of my life which is sad. My neuro surgeon thinks I’m having seizuress still because of my surgeries. So far I had six surgeries in less than a year. I still have hope but I know if I don’t take my meds a seizure is possible.

Hey! I know how it feels. I’m a year and a half out & I just maxed out on Trileptol & am now going onto lamictol. Trileptol is fine really. It might make you a little more tired, but I think that’s the worst of it. It just sucks. Seriously, you think it’s all over & then this comes up. There is a specific group on here for it though…I got a seizure specialist to help figure things out.