So I had my AVM brain surgery and I had it because my AVM ruptured and caused seizures to the point that i nearly died. I’m currently on phenytoin (anti seizure) meds and apparently i have to be on them for two years. is it really necessary because i did get my avm removed. i got my surgery in thailand and usually thailand’s hospitals are known for being sketchy and selling as much meds as they can to you.
Hi @fran! I want to say, as a multiple ruptured cranial AVM survivor, I’m so sorry you have to go through this. Second, of course check with your doctors for any final word on the matter. And third, perhaps the most important bit, if you have any adverse reactions tell your doc pronto! I am a generally easy going happy guy. My doc switched me from one antiseizure medication to another because I was abnormally sleepy. Well the new med fixed the sleep problem but it also made me briefly contemplate suicide as in I had the gun loaded. So I told my wife and we met with neurodoc and they switched me to another antiseizure medication and I’ve been fine ever since this more than 10+ years ago! I hope you can get it figured out and I wish you all the best as you continue!
thank you so much, i consulted my doctor and booked an appointment for monday. i’m so sorry you had to go through that i’m glad you’re doing well!
1 Like
Fran,
I’ve not had to have seizure needs but it is a common thing to need to have, more often immediately after surgery. My interpretation of it is that whether you’ve had a bleed or you’ve had surgery, rummaging around inside your head upsets things and the seizure meds are to help you get through that time of upset.
Some people do stay on them long term.
Hope you’re doing well!
Richard
2 Likes
Well I know s lot of people take Dilantin with no issues, but getting off of it made me feel better. I currently take levitiracetam and lamotrigine and feel much better.
Hi @Fran I’m glad to hear you’re doing well after surgery… It is not uncommon to be on anti-seizure medication after surgery as any major brain trauma can trigger them, however the best person to speak with would be a medical expert who also knows your situation… God bless!