Hi Kristi, I am around 4 yrs post crani. I have had hundreds of seizures since, I have felt everyone coming except for the ones I have whilst sleeping. I am taking 4 seizure meds, plus last year I had VNS ( vagus nerve stimulator) implanted, like a pacemaker for the brain. I have epilepsy, debilitating headaches, light sensitivity, and severe memory loss. I can feel like a lighting storm going across my brain before a seizure. My neurologist is certain that all of it is because of AVM.
It sounds like you need a new neurologist! Maybe some different meds, Keppra is a good med, I am taking Vimpat now I have tried almost everything else. Sometimes it takes just the right med so you don’t have seizures. Don’t feel like you are the only one that has gotten the shrug treatment. The truth is the brain is a mysterious thing, even with all our technology Dr.'s don’t exaxtly know the mechanisms that cause seizures or why they happen. You probably know more about it yourself, there are certain triggers though. Some examples include not enough sleep, stress, light, and various others. Try to figure out what you are doing before you have your seizures.
Just remember their are hundreds of people here with you, we are all here because after an AVM it is a lonely experience and existance, I for one am always willing to offer an ear or whatever I can offer. Peace be with you.
Hi, Kristi, I had a bleed in my right parietal lobe 15 months ago and was on phenytoin (Dilantin 400 mg/day and never had an issue until October 6th when my wife said i just went blank. I felt trembly in my left shoulder and left knee (My afflicted side) and was aware of everything going on. I could not answer my wife and kept willing my right hand to grab my left knee but it would not respond. The event lasted less than 2 minutes.I had a repeat about 2 weeks later My neuro had me go to the e.r. and get a CTscan and Dilantin level check. Scan normal, but Dilantin level slightly toxic at 21.7 the first time and 22 the second… My neurologist said that did not cause the focal seizures and added Keppra to my med regime. I go for EEG Dec 11. Both times I had no warning and as fast as they came on, they subsided. The second time I got my right hand to grab my left arm and that was it. No pain either time.
Suzy, my daughter had her brain AVM dissected in 2006, and has never had a seizure either. I remember the neurologist or neurosurgeon saying we'd have her on Dilantin to prevent seizures and she was weined off of that within 6 months. I think the chances of seizure activity go down at that point (?!) She had 3 more surgeries but not inside brain, just to replace then repair the bone flap and didn't have to go back on Dilantin.
Hi Trish,
I was just reading through different seizure forums and saw your post. I’m one month post AVM removal (craniotomy) and I am currently taking 1000mg of Keppra per day. My bleed was 2.9cm in my right temporal lobe when I was admitted but I have never had a seizure prior, during or now post surgery. Did your ever take meds like keppra as a precaution? If so, how long were you on the meds? Also, where was your avm located and did it bleed before you had it removed? Thank you!
I was never on any anti seizure meds. I had a major bleed before I knew I had an AVM. It’s been over 9 years and I have never had a seizure.
And my AVM was located in my right parietal/occipital lobe.
Thank you, Trish. I think the anti seizure meds are just a precaution because of where my AVM was located. Praise God you have been cured and seizure free for so long!