Seizure After AVM Removal?

Hello and happy new year!

I hope everyone is doing well and staying as healthy as they can be.

I wanted to ask if anyone here has had experience with seizures. Anyone reading this can check my post history, but when my AVM first presented it was through an aneurysm bleed resulting in a seizure. I’m several months post AVM removal via craniotomy, but my neurologist remains concerned about seizures starting again. I understand that some people do start having seizures after surgery, but I have not had any issues since my bleed. To be honest I stopped taking anti-seizure medication in September 2022 as it made me too drowsy (I acknowledge this is bad and urge everyone to listen to their doctors - don’t be like me!). But no seizures or anything similar to them.

I did have an appointment with my neurologist last week and she finally agreed to discontinue the anti-seizure medication. I wasn’t able to tell her I had stopped them ages ago - it just wouldn’t come out of my mouth. I really want to restart Wellbutrin and Adderall - the medications I was on for a short period before my bleed. It was the first time I had taken antidepressants and medication for ADHD, before I thought I was just stupid for lazy. Being able to get up, do chores, homework, work and still have energy to pursue my hobbies or exercise was so incredibly amazing. I am so grateful that I recovered from the AVM without issue - I really cannot complain and I understand how lucky I am. I just want to do better again :slight_smile:

Has anyone been able to start Wellbutrin and Adderall after craniotomy?


Hi Vepvic, You are telling Noah about the flood. Although I don’t know how old you are, we’ve had pretty much the same journey-- bleed, 2 craniotomies, seizures for 39 years, plenty of emotional/mental problems… (my story in a nutshell)
Anyhow, I ran through the full gamut of anti-seizure meds ( dilantin, phenobarbitol, tegretol, kepra and now I’m on lamotragine.) The barbituates left me with no quality of life or memory. The kepra made me aggressive/bad impulse control. There’s varying levels of efficacy and it’s been tough to find the right balance with quality of life. Do research and remember there are lots of options. Trust your instincts.
I will let you know that you’re definitely not alone with your mental health issues-- definitely nothing to be ashamed of or embarrassed. Share a lot here-- it’s amazing therapy in and of itself.
Get a neurologist you can trust, good repore, and communication. I’ve been down that road too, finding a good fit can be tough. Stick with it. You’ll probably need to force yourself to be patient.
My neurologist said I’ll be on the anti seizure meds for the rest of my life. You’ll have to figure out if it will affect you driving. My seizures happen during sleep so I’m okay to drive.
I’ve made the exact same mistake as you going off the meds myself. It caused me bad/more seizures.
It’s not easy but you’re going to need to be patient. Know that patience is a skill and it can be developed even though it’s not natural for you. I’m happy to write more if it will help you… knowledge and sharing are what people here have. It’s confidential and people are generous and caring. Best wishes, Greg