I have suffered two seizures as a result of my avm. One before surgery and one after. I have been placed on Keppra to reduce the chance of reoccurrence and wondered if this was the same result for anyone else? Are you automatically going to start having seizures after avm?
Hi...Depending on the area of the brain damage, you may get seizures.
My AVM surgery was on the left side of my brain and after the surgery, I was put on Keppra. I was told that perhaps they could take me off it, but after 2 years, I tried to lower the dose and had a grand mal...so from that experience, I was told I would have to be on the med for the rest of my life.
Every case is different..so keep the faith!
Yea no how it feels. I have been taking Keppra and tryliptal for over ten years. They tried reducing a month after surgery and had a seizure so they kept me on the same meds. Been going for over 10 now and haven't had one. I'm going to stay with my pills because if you have a seizure your not allowed to drive for up to a year and that would be a little tricky to get to work.
I went to the ED with a brain bleed- took them 20 days to find the 'source' of the bleed. It was an AVM off the main artery on one side. They found another one on the other side, still intact. The bleeding AVM was removed, the other had a tiny aneurysm on it which was filled with glue. Since I don't remember any of the 24 days I can't say I remember having a seizure in the hospital but was immediately put on keppra after surgery. Maybe I had one during surgery- I have no idea. I am still taking it but it's only been 8 months. If they do try to take me off of it I'm going to ask them to do it very, very slowly and give my body time to react to the lack of keppra in my system. Keppra isn't so bad but my stomach has been torn up since coming home from the hospital and they didn't start me Keppra until after the surgery- which was 4 days before I went home. I hope it's not Keppra causing this. Good news: I've lost 50 lbs because of this whole awful thing...better news: I didn't bleed to death and die. I take 750mg twice a day..what does everyone take?
Hi there,
Here’s my advice with the seizures. I was diagnosed with a AVM in December in place or stroke like symptoms that are actually a seizures. They found it in the left parietal lob along with a aneurysm. They put me on Dilantin right away. Everyone is different. With my surgery in March I had multiple seizures post op in the hospital. 6 Grand Maul in two days. After that they put me on the Dilantin and Keppra after i got home. it took about a half of month for the Keppra to react and It was not good. The side affects from Keppra made my emotions go haywire. (my poor family had to deal with me) They took me off the Keppra and just kept me on the Dilantin. I have not had a seizure for the past 3 months untill 2 weeks ago. The seizures that mimick a stroke came back. I was very upset about this. My doctor is now taking me off the Dilantin and im currently being switched over slowly to Lamictal. Dilantin is doing a harm to my body so im happy they are swithching it over. Since two weeks ago i haven’t had a seizure. My surgeon and my doctor say they hope i will be seizure free within a year. The Brain swells after surgery and bugging the tissues so seizures are common with and after surgery and they most likely will not be permanent once the brain heals.
I understand your situation and i know it can be a very scary thing but seizures are manageable. The best way to deal with this is have the people around you every day and during recovery be educated on what to do if it does happen. Be in contact with your doctor if you feel uneasy about it. Seizures are nothing to play with but it is manageable with medications and healing.
Good luck and if you need to talk or anything at all we are all here to support you in the journey. you are not alone.
Yup. I had my AVM rupture in 2008 and began having seizures after my brain surgery. Unfortunately I was put on Keppra and I am still on it after 8 years.
I have many seizures as a result of my avm, but keppra helps. Much more so than dilantin did. You might also consider asking your doctor about cbd oil or marijuana. I have found no way to predict wether they are permanent or not sadly, so goodluck, I hope things go well.
I have not had surgery, but I have had radiation. Mine was discovered because of a seizure. I asked my doctors if they thought I would ever be able to come completely off of them. They said no. Might be able to decrease them at some point, but not totally. I hate taking so much medicine and the way they make me feel, but you do what you got to do. I'd rather take lots of medicine than to have seizures any day.
Thank you Jazmine! <3
Hi I’m what everyone that I’ve come into contact known as Tex. I decided to have it Gama Knifed early in the process after two embolizations had three months of close eye on it by Dr.Scott and I’m not on any meds. I got to walk across my high school graduation stage and had been walking since sixth grade and the bleed encountered in third grade. I was blessed to walk across my graduation stage from high school in 09. And have had many inspired by my success. I wish you nothing but good will and I’m here if you have any questions.
Yours Truly,
Tex
I thought I was done with seizures. 3 years without a grand mal… Had one 10 days ago. I suffer from petit mal and absence as well, but I’m happy as long as the grand mal stays away. But, unfortunately, I will always live in fear of having one at any moment
I had a few seizures the day my AVM ruptured. After it was occluded, and then removed I never had another one. I remained on anti-seizure meds for the next 9 years, then was weened off of the meds completely. Almost a year has past since then with no issues.