Cavernes malformations, having trouble getting info on how long my recovery will be

Its almost been 4 months after my hemmorage. I have had a time with meds they keep pushing on me. So i am trying to figure things out myself. I am at half dose of keppra now and no sieizures or side effects from keppra just head aches. I started walking on treadmill 2 weeks ago and going out. Keppra made me sleep alot and no energy at all. I started have really bad panic attacks. Had follow up visit with doctors and they wanted me to take aniexty and depression meds and stay on keppra or switch.
I have multi cms and this is my first bleed at age 54 so I guess i am lucky. My hemmorage did cause slight numbness in right of my face and my vision has changed alot. my cm is pretty large the rest are small. Has anyone had this and not had surgery. I have read alot of books in the last month now that i can read again. Trying to get off gluten and exercise up to 1 mile walking. depression is gone and I have energy now that my keppra is at 750. I am starting 500 tue.
I read the book Grain Brain. Made alot of sense.
It only been 4 months a little scared to stop keppra i am on 750 mg now and getting ready to go down to 500 then 250 at 2 weeks on each. One doctor told me thats how you come off keppra. but I wonder if my seizures are over haven't had one in 3months. ONly had them because of blood on my brain.Does anyone know how long it takes to dry up??? Doctors won't comment. Is anyone else going through this??

Hi Sue, I was diagnosed with an AVM in 2008 and have had conservative management since. Depending on the location doctors may /may not operate. I have been in several mess (trial & error). I understand it is fear of the unknown however you must stay positive. You probably had this since birth and have lived a normal life until now. Try keeping a routine, headaches may always be there and are annoying but can be kept at bay. I came off mess and took my first seizure in 2013 so back on them. Check out doing meditation or Mindfulness which will take your mind off clinical issues and relieve stress… Best of luck

I know everyone is different but your story sounded so similar to mine I thought I would comment. My AVM rupture was in August of 2011. Following it I was also on Keppra for some time and absolutely HATED it! It caused anxiety, depression and basically misery. Just as you are doing I titrated myself off of it over a period of several weeks and felt better almost immediately:). In the mean time, exercise, sunshine, healthy food, hanging out with friends and family (anything that keeps the symptoms tolerable) can all help you get through. I hope things go well for you as well! Good luck!!!

doctors did'nt tell me much iether... one doctor at the hospital told me the blood does not get reabsorbed, that it causes pressure always. That worries me because it was'nt the blood that kept me in the ICU 6 days it was the pressure caused from it,, im still taken 1000 mg of Divalproex Sod a day. I have a 30 day supply but i don't know if the pressure will come back after these pills run out. Its just so easy for it to build up silently. The pressure is what damaged my right eye.. and its still frustrating,i still get pain behind my eye. but yes the docotors seem to not understand everything iether... and it makes this whole thing even more scary. my siezures are partial, but there. I find myself listening to someone and then there half way through a sentence and im confused about what were talking about.. i miss things and i know it. i try to hide it, but i hav'nt a big one in a while so im glad.. im on trazodone... i stopped keppler. *-

Hi Sue,
& welcome!
The brain is a very slow healer, plus Keppra (or other anticonvulsants) can make you feel not yourself until your body adjusts to it.
Finding an experienced & knowledgeable CM expert is essential, as well as learning as much as you can at your own pace w/out overwhelming yourself & being your own advocate is essential.
I too have multiple cavernous malformations & have had 4 bleeds requiring 4 surgeries.
Please visit our CM sub-group @ & know you're not alone.
Best wishes.

I am quite familiar with Keppra, because I was on it, 750MG, for many, many years. I now am on a generic dose of Keppra which called Levetiracetam. YES, it also has made me more tired as well. I hope you might be cured and you will not have to take it eventually. If you do still have to take it, hopefully, in time, you might get used to it, because I have. I also get better sleep now because of the med. In my way younger days, I was lucky if I got 5 hours of sleep every night for years. Now, I do try my best to get 8 hours of sleep every night, and I know that is from the med, and I just try to accept that.
Now, as you know, Sue, every one AVM is different, and so is each surgery. But after my 2 strokes during 7 brain surgeriesw/a coma along with it all, for years and years, I was getting NO MORE SEIZURES. So, I did ask my neurosurgeon if I could get off of the Keppra, and he thought I might be cured. I stopped the med and did wonderful for about a year and a half. Then, one day, I did have a very miner seizure. So, I accepted that I was not 100% cured but almost. I told my neuro and we decided for me to go back on my meds. I accepted that fine, and I am STILL way more Blessed than ever.

Good, good luck to your future, Sue.


Sue, you might try Omega’s in large doses. My daughter started taking them to help with her post seizure mental confusion and memory shortages. She also uses coconut oil and drinks coconut milk.

The combination has made life so much better for in between. She is on Keppra as well.

As FYI, for anyone untreated &/or having existing lesions, please use caution w/ supplements. Omegas, fish oil, vit. e, advil, ibuprofen, aspirin, Sudafed (to name a few)pose blood thinning risks, which can lead to bleeding.