New to avm

My daughter had an avm unknown to any of us until it bled on April 4th right before her 25th birthday. Thank God her boyfriend got her to the hospital in time and the neurosurgeon did a good job on her emergency operation. I drove the 8 hour drive to Florida to be with her the entire time. She got released from the hospital two days ago and now I am back home in Tennessee. She seems to be doing nicely. They have her on anti seizure drugs which have me worried because of those side effects, but I told her to watch how she feels and keep her doctor appts. We don’t know what the future holds but it sure was nice to find this site for avm survivors. It isn’t a mystery illness she has that nobody else knows about!!!

Mom (april)

April, You will finds lots of advice, support and information on this site. I had my 1st AVM discovered in 2000 after a bleed and found this site last year.
Regarding seizure meds, I found I had to “experiment” with different drugs to get the best for me with the least side effects.
Most people have not heard of an AVM, in my experience a lot of doctors have no idea!
Hope your daughter is OK any questions you have just ask and someone will know the answers.

What med are you on? They put Andrea on depokote 500 mg twice a day. That always worries me because she only weighs 94 pounds.

I was taking 1000mg Epilem, same as Depokote twice daily 2000 per day then I added other drugs as well Lamotragine, so that dose seems OK

April, your story sounds a bit like mine. I was 25 when first diagnosed with my AVM. Mine was not due to seizure activity at the time, but major headaches and a partial vision loss is both eyes. I found out about my AVM on Halloween night, 2001. I was living with my then girlfriend/now wife (who, coincidentally is about 100lbs dripping wet) and called my parents that night They drove almost 400 miles from Orange County, CA up to my place in Monterey and did not get to our place until almost 2am.

I have been on multiple anti-seizure medications over the years and the one that I have had the most luck with is Keppra. It has given me the lowest number and least severe side-effects. From what I understand, Keppra is a medication that usually works best in conjunction with another form of anti-seizure medication, but my neurologist has always just had me on Keppra by itself. Again, this minimizes the side effects, but does not necessarily give the absolute best protection against seizures, However, he also tells me that worst case scenario is that I will feel a bit lousy if something comes along that starts to trigger a seizure and the Keppra does not completely halt it, but keeps it to a minimum. For example, if I were to have a grand mal seizure while not on Keppra, well, I’d have a grand mal seizure, but under the same situations while on Keppra, the seizure could take on the form of a less severe seizure, say, a simple partial or “aura” type sensation. I have had this happen a few times over the last 4 years, and while they are certainly uncomfortable, nauseating feelings, they do not knock me out, cause convulsions or do anything that is likely to cause significant harm.

as much as the meds are a pain the siezures are dangerous and need to be keept under control if your worried about weight loss weight gain is more common on depokote and most anti-siezure meds

I also take seizure meds…The first one I took didn’t work for me .Now I am on Tegretol and so farit’s good I have no side affects. If meds she is on don’t agree with her they will change them ,…so dont worry about that. I WISH HER THE BEST

Well thank you to all of you for your insight and helpful comments to Andrea’s situation. I just talked to her and she is still fine. She is eatting everything in sight due to the horrible hospital food. Andrea took Keppra for two days and the main neurologist switched her back to the Dilantin and then a different doctor put her on depakote. The Keppra seemed to have the least amount of side effects, but the doctor felt it was too expensive. I don’t mind paying for the med for her just as long as it works and is the best suited for her. Why do these meds have to be taken so long? If she never had a seizure before, why would she get one now??
Still confused as to how avm’s affect a person so long after they have been operated on.

Hi April. My daughter had her bleed two years ago at 15 years old. They had her on anti seizure drugs for a long time, but she never had a seizure. They did make her REALLY hungry and she gained about 15 pounds, all lost when she stopped the meds. Here we are two years down the road however and we still have memory and verbal processing problems. Perhaps it is where the bleed occurs. Katie’s was very deep an inoperable. She is planning on starting community college in the fall. I have my fingers crossed.