Continued seizures post AVM

I had the AVM in my brain treated with cyber knife in 2013, with it being successful in 2017. I spent the next few years without seizures and living my normal life. In 2021, they suddenly returned. I have gone back on seizure meds and it’s only made things worse. My scans show that where my AVM had been in my brain is starting to shrink now. The neurologists I have worked with seem to not have any clues of what to do. The seizures are getting worse, and more often. I’m constantly afraid it’s going to happen, making me filled with anxiety and paranoia which only makes things worse. I’m scared. I just want my life back, without the seizures and anxiety. I want to live again, and it feels like no one knows what to do or how to fix it.
Has anyone had anything similar in their recovery? What helped you?

Hi Devon, My history is similar to yours except I had 2 craniotomies instead of a cyber knife. And I had seizures almost immediately (age 14) and have been on meds ever since.
Some of the meds have helped and some have been train wrecks. Keppra was awful for me emotionally. Phenobarbitol turned me into a zombie and I lost years of memories.
The good news is that you can still lead a good “normal” life. For me it’s a constant balancing act requiring patience and realistic goals. Some days I’m very low energy.
Sorry to hear that you are having seizures and I’d expect you to have some fear and anxiety. There are techniques like meditation and getting out into nature that have helped me. I’ve also been somewhat destructive (drinking) and of course that just makes matters worse.
Please take it slow and be kind to yourself every chance you get. Best wishes, Greg


Hi Devon. First let me say, I’m not a doctor but an AVM survivor. Second, I’ve bled 3 times with a stroke to boot. Third I wrote a book that deals with those type of questions (check to profile or go to www mymalformation com. Fourth and finally I would suggest telling your neurological team and see what they say! Blessings as you continue, grace & peace as you go!

Hi Devon. I had a bleed in May 2016, Gamma Knife in November 2016, scan in February 2019 showed it was obliterated. I had never had a seizure, until January 4th of this year when I experienced my first. It was over 5 minutes and I lost consciousness, ended up in emerg, and am now on seizure meds. I am seeing a neurologist and am hoping to have an EEG soon. He believes it may be related to some scar tissue reaming at the site in my left temporal. He believes it to be the focal point as it came on starting with language issues first and then to full on grand mal, or tonic clonic as they seem to call them now.

I haven’t had another since, actually 8 weeks today. Side effects for the meds for me are minimal. I hear you on the anxiety! Two and a half weeks post seizure my wife and I flew to Hawaii for two weeks. While no one ie// her, has no idea how scared I was getting on the first plane, let alone the second one for 6 hours. To help reduce my anxiousness, I got a medical alert bracelet, have a crash indicator on my Garmin watch that will send a text with a gps location to her if I crash. When I went running I took ID, wore my medic alert bracelet and had an apple air tag with me. I do a lot of running, and biking in the summer. So I am just doing what I can to position myself in the best possible position should it happen again, carrying the info, and the air tag and watch with the “incident detection”.

I am going though all the medical search, but those few things made me more comfortable in carrying on as best that I could. Did it remove all my fear, no, but helped. I know we are all so different but hope from the few things I did you may give you some ideas for a few other little steps. Im pretty sure EMS would be happy with a phone number, a bracelet that says seizure and NKA (No Known Allergies) so they can be comfortable in treating me.

Wishing you the best! John.


Hello Devon. I’m sorry you’re going through all of this. My AVM bleed was in 2003 and I had a craniotomy. Most of the memories of my life were erased and it is still extremely difficult to remember anything. Over the years I learned how to improve my memory, but the memories that were erased have never returned. I don’t recall ever having any seizures after my surgery, but I have been on Gabapentin since 2006 or so. I went through a lot of tests for seizures but never diagnosed with any. I was extremely afraid that any sickness I had, if anything felt off in my body was the result of my AVM. But I eventually learned to just accept my new life for what it is. It took a long time of course. I still get dizzy a lot and have fainting spells occasionally. I still live with things to this day, but in 2022 I graduated from college and now I’m working again. I went through years of different therapies and medicines until we found a combination of medicine that gives me the best quality of life. At some point I just came to the realization that it’s pointless to go through life scared and angry all the time. I can’t go back to the way I was before it happened. I learned how to enjoy life and find new things that interest me and bring me joy. I am confident that you will do the same. Be proud of who you are and what you’ve been through and go through and you still get to wake up every single day.

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I’m so sorry to hear you are suffering from seizures again & completely understand the anxiety related to this while living everyday life.

My best advice is to talk to your medical experts to determine the best medication to assist you with living life and with minimal side effects.

Sending prayers your way & hope you overcome this hurdle ASAP… God bless!