My husband is the AVM survivor. Unfortunately the craniotomy left him with a seizure problem. He finally found the mixture of Lamictal (300 mg daily) and Keppra (3000 mg daily) (both generic) that works for him, and thankfully he has not had any seizures for 18 months. After surgery in Oct 2008 he had 6 Grand Mals until Oct 2009 then found the perfect drug mixture after much trial and error. His AVM/surgery was in his left temporal lobe which I have read is “more prone” to seizure activity. Since he never had any seizure problems before we think it is the crani that started this problem.
We go to the seizure doc this week for his 6 months checkup and he really would like to wean off slowly one of the meds, most likely the keppra as he feels that is the one that makes him tired. How many out there have become completely med free and also seizure free after their crani? What have others docs told them regarding how long they should stay on seizure meds? Thanks for all your input and thoughts.
It might vary from state to state, but there are at least two methods of testing that I'm aware of to see about getting off anti-s meds. My wife had a followup EEG about 2 yrs following her last surgery. The abnormal EEG indicated that she would need to stay on her anti-s meds forever (or unless she tested again later and found a normal EEG).
Our son takes anti-s meds for epilepsy, and has had surgery to remove the brain hot spots. His neuro said that they could ween him off his meds to test, but that he could not drive for 3 months while going off meds.
One thing that "helps" in KS is that if you have a seizure while a DR is changing your meds, it does not count against your driving privileges (the six months or one year after a seizure before you get your license back).
Thanks Ron! Steve did have an EEG in Oct 2009 (one year after surgery) and it did show seizure activity then. What have you read/heard if an EEG does show "clear ~ no activity" how accurate is that reading? Also if you are on seizure meds at the time of the EEG (which Steve was) could that give a false reading if once again he took another EEG and it showed clear. Was you wife on seizure meds when she had her EEG? Sorry to hear your son also has to go through those horrible things, I think seizures are awful, of course it's much harder on the person having them, but pretty bad on the one's who witness them.
Blessings!
Marie
Ron, KS said:
Hi Marie,
It might vary from state to state, but there are at least two methods of testing that I'm aware of to see about getting off anti-s meds. My wife had a followup EEG about 2 yrs following her last surgery. The abnormal EEG indicated that she would need to stay on her anti-s meds forever (or unless she tested again later and found a normal EEG).
Our son takes anti-s meds for epilepsy, and has had surgery to remove the brain hot spots. His neuro said that they could ween him off his meds to test, but that he could not drive for 3 months while going off meds.
One thing that "helps" in KS is that if you have a seizure while a DR is changing your meds, it does not count against your driving privileges (the six months or one year after a seizure before you get your license back).
Remember that I NOT in the medical field, so my answer is based on our experience and what we've been told.
Chari was on anti-s meds, as was my son, when tested via an EEG. Chari's EEG showed abnormal electrical activity, which told us that without the anti-s meds, she would continue to have seizures. IIRC, Allen's was normal most of the time. His epileptic complex partial seizures (non-AVM) only occurred about every 3 weeks. So for him, unless he was having a seizure, his EEG would appear normal. It took several weeks of in-hospital testing with a grid on his brain to fully document where his hot spots were. It was very interesting (and also horrifying!) to watch as during periods of non-seizure activity, they electrified each of about 80 spots on the electronic grid on his brain, while doing a complete neuro exam. Sometime, the charge would have zero effect. Other times, he might lose his speech, or part of his face would twitch, or he couldn't lift his arm. They used the mapping of "good brain activity" and "bad brain activity" from during seizure to determine if and where they could operate to remove the bad areas. He had his amygdala removed and while still on meds, has had no seizures for 6 yrs. For him, if he will stop driving for X months, they would wean him off the meds to see how he does.
Since Chari tested abnormal, she has to stay on her meds.
BTW, my understanding for anti-S meds is they don't really stop bad electrical activity, they simply keep it from breaking through and creating a seizure.
At least, that's what I understand.
Ron, KS
Marie Hudson said:
Thanks Ron! Steve did have an EEG in Oct 2009 (one year after surgery) and it did show seizure activity then. What have you read/heard if an EEG does show "clear ~ no activity" how accurate is that reading? Also if you are on seizure meds at the time of the EEG (which Steve was) could that give a false reading if once again he took another EEG and it showed clear. Was you wife on seizure meds when she had her EEG? Sorry to hear your son also has to go through those horrible things, I think seizures are awful, of course it's much harder on the person having them, but pretty bad on the one's who witness them.