Seizure free after 11 years...stopping meds?

Hey all!! I'm new to the group and have a quick question! I had a few (maybe 4?) seizures after I had surgery in the summer of 1999. Since then, I have been on Tegretol and have been seizure free. I'm looking into getting off the meds and am wondering if anyone else has had a similar experience. My neurologist thinks that I should stay on the meds...forever. thoughts? thanks!!

Hi leigh828,
After taking anticonvulsants for 20 + yrs., one of my drs. gave me the option of coming off of them, but I was uncomfortable with this idea & opted to stay on a low dose of Keppra & do fine on it.
Did your neuro explain why he/she feels you need to take them "forever?" I would encourage you to
work w/ your neuro or HCP on the meds & w/their guidance, decide what's best for you. :)

I was on Keppra for about a year after my bleed/ crani! I gained 20 pounds on it, so I begged my neuro to come off! I've had NO seizures since! 0! But my Neuro gave me his blessing to drop the Keppra

Thanks for replies! My neuro feels that my brains' "normal" was the AVM, and once that was taken care of my brain started having the seizures because it was like "what the heck is going on here" :) He believes that if I were to go off of the meds I would begin to have seizures again. He suggested that I have a 2 hour EEG and go from there. I had a 30 minute one about 5 years ago that showed some abnormalities.

Hi Leigh,

It's tricky...you might be seizure free because you've found exactly the right med, and in that case, you don't want to mess with success.

Is your neurologist an epileptologist (seizure specialist)? If not, you should definitely look for one; if s/he is, think about finding another one for a second opinion.

Has the neuro talked about a video EEG, where you're monitored for a full day or night? (Keep in mind that a positive EEG result means that something is definitely happening, but negative EEG results are pretty meaningless, because you have to be having seizure activity during the time they test you, and of course the med will be working to suppress any seizure activity that might be going on.)

Ninibeth, your story sounds very similar to my own! AVM free since 1999 from a large AVM! My only concern with wanting to come off of the meds is having kids. I'm 30 years old with one son and i would like to have more! :)

Hi leigh828
I had a few seizures after the day of my stroke and have had none ever since. Its been 4 months since my craniotomy and I am coming off tegratol at the end of April. ( which will be 6 months total). My neurologist said there is no right or wrong time to come off, just that if you have a seizure you will have to go back on. For most people this holds up a part of their life as you cannot drive etc for a period of time so they just stay on. My advice is to come off the meds if you have been seizure free for sooo long. You may not need them and they are not good for you anyway.Of course this depends on the severity of your AVM. Mine was quite small and my few seizures were a result of an "injury" to the brain, you likely do not have a seizure disorder. I am so stoked to come off and truly believe I will remain seizure free. We are hoping to get pregnant this year and I believe this med is important to get out of my system before then. I wish Good luck to you!

Thanks guys. I had one EEG about 5 years after my surgery which came back with seizure activity (hadn't had a seizure in about 4.5 years). It's been over 6 years since that EEG so we are going to do another 2 hour EEG in the next few months and go from there. My neuro feels that I've been seizure free for so long because we have found the right med and dose for me. He doesn't specialize in epilepsy, however he has been my doctor for about 13 years and I really do trust him. ugh...if only there were easy answers for everything. :) Thanks for all of the advice!