So, my boyfriend had his 1st gamma knife surgery in August 2024. We’re at the 9-month mark and we foolishly thought he was seizure free. Well, he had a seizure 2 weeks ago and it was a bad one. He’s had to increase his dose of Keppra and Lamotrigine which has left him grumpy, depressed, and angry.
We did find out that his AVM has shrunk by 22% bringing it down to 3.8cms. I know the doctors say that there’s no way to prove that the seizures are caused by the AVM. But his seizures originate from the same area that his AVM is in, so we kind of think the two are related.
My boyfriend and I are disagreeing on what we remember the doctor saying. He remembers the doctor saying that even after the AVM is gone, he could be on anti-seizure meds for a lifetime. I remember him saying that if the AVM and seizures are related, the seizures will subside after the AVM is completely gone.
Has anyone had experience with seizures after their AVM is gone?
What am I looking at here? Will he really just be “chained” to a medication that makes him angry and depressed for life?
Hi, I am not a medical professional, but I do have an AVM that has caused me to have a seizure and other seizure like symptoms, also originating from the location of the AVM. I saw a few neurosurgeons about gamma knife and I was told that even if the GK eliminates the AVM it can cause scarring around the AVM, or the AVM can cause some tissue damage that could require an anti-seizure med. I think once the AVM is eliminated you can speak to the doctors about tapering off of the medication. It can also cause swelling around the AVM while the radiation takes effect and this can cause seizures I believe. This is just my understanding!
Unfortunately the risks of GK were too high for my AVM/situation.
I have been on Keppra for close to 2 years now and the side effects are pretty non apparent I would say, so don’t lose hope.
Sorry to hear this about your partner but from my understanding any brain trauma may result in seizures at any time and is managed with medication as such if required… you may want to speak to the medical team treating him about his side effects as they may offer alternative anti seizure medications that may not impact him this bad.
The brain is the main computer that controls our bodies and when we are impacted like this it can be extremely frustrating and you feel a sense of helplessness and that you have no control, which definitely contributes to our moods… I’m not saying it’s acceptable but he needs to look at options to help keep him calm etc as stress will only increase his chances of seizures also.
AVM free or not the risk is always there with brain conditions and generally managed much better as time goes by… I’ve read many posts here with patients switching the medication due to such side effects also… wishing you guys all the best… God bless!
I’ll try to keepo this short! I had a left temporal AVM bleed in May 2016, GK in November 2016, confirmed obliterated in February 2019. No seizures until January of 2023, and it was over 5 minutes, hospital trip and started Keppra, and have been on it ever since. There is no way to prove it was caused by the AVM, but there is a scar where the AVM was and the seizure was consistent with a left temporal focal point seizure. Now on that day I had done a fairly extreme workout, was tired and under a lot of stress.
All this considered, there is no absolute but it is probably due to the “artifact” left behind from Gamma but no way to tell for sure. My neurologist believes I sould remain on Keppra for the rest of my life, and I certainly will for the time being, limi\ted side effects and seizure free. Once I retire I may try to wean off however it will impact my ability to drive, even a change in medication, and that is a consideration for sure.
So I don’t imagine any Dr. will consider the cause 100% to be related at this time but for me it appears to be related to the AVM and specifically GK. If I had a craniotomy instead I would immediately started on seizure meds due to location. Take Care, John.
I had an AVM in my right occipital. We “discovered” it after visiting the doctors office with complaints of what I referred to as “episodes” including disturbed vision for about 10-20 minutes followed by hours of nausea. I met with a few different neurosurgeon teams in the area for opinions and 2 of the 3 didn’t think my episodes were caused by my AVM; the 3rd thought they could be related.
I had an embolization to treat the AVM in June 2020 followed by 1 round of GK in August 2020. After this, the episodes changed a bit; I noticed they were not as frequent, they lasted only 2-3 minutes long and there was no nausea any more, so I assumed they were indeed related to the AVM.
The AVM was deemed obliterated in August 2023. In 2024, however, I noticed my vision was changing a bit; it turns out it was collateral damage from the GK (radiation necrosis and inflammation of the brain).
After seeing a different team of neurosurgeons, they suggested my “episodes” were small focal seizures and I’ve been on Keppra for the last 4 weeks. The meds definitely affect my mood (shorter fuse) and make me super sleepy, which I discussed with my doctor last week. He’s suggested switching over to Topiramate; I’m going to see if maybe reducing the dosage to Keppra is an option. I am also concerned about being on Keppra forever, but from what I’ve read its not necessarily meant to be a medication that I need to be on forever, so we shall see.
I’m not a doctor, but perhaps discussing Topiramate with his doctor is an option?
My boyfriend has been on Keppra for a few years now and he definitely feels the side effects. His therapist recommended Brivaracetam because that has fewer side effects. However, I’m still seeing “suicidal ideation” as a side effect in both drugs.
We’ll talk to his epilepsy specialist in a month, see what he says.
Thank you for the suggestion! My boyfriend’s therapist also recommended Brivaracetam - so we’ll bring up both options to his epilepsy specialist during his appointment next month.
Sorry to hear about your ordeal. All of you are so, so strong and brave going through this. I don’t know if I would’ve handled it well. The short fuse on Keppra is what my boyfriend is going through as well and has been for as long as he’s on it. He’s never angry towards me, he’s just…frustrated and has a general anger towards the world attitude. He recognises it’s because of the meds. Hopefully therapy helps with this too.
I’ve definitely had my ups and downs, hard to know how much of it is the Keppra or just living with the knowledge of the AVM itself. I speak to a therapist regularly as well. Having friends and family close like you helps as well. Wishing you both the best!