I have an inoperable Grade 5 AVM on the right side of my brain and have been diagnosed with this for 7 years, and get migraine/seizure like symptoms now and then. Really bad headache/tingling, impaired speech, etc. An EEG said I don't have epilepsy, but I am on anticonvulsants to prevent these.
From what I've read, most people seem to be getting seizures after their procedures, is there anyone in a similar situation? Just wondering what your symptoms might be like and any management strategies you've found helpful.
My daughter is in a situation like yours. Her grade 5 avm is on the left side of her brain -- she has migraines, focal seizures, left side weakness, exhaustion and aphasia. She is on anti-convulsants which certainly help with seizures but other symptoms don't seem treatable.
I'm not sure what you mean by 'similar situation', so I'll just say this - I am on high doses of AED's and still get some seizures. They are very unnerving and come completely unexpectedly. The best medicine for them is to just not worry, acceptance is key.
As for other symptoms - I get anxiety, headaches, irritable (almost like a pain+tickle+tingle) right leg, weird 'brain twitches' as I like to call them (basically like a strange split-second flash of sensation), and sometimes sharp pains near my AVM. The sharp pains are kind of random but I try not to change my blood pressure too quickly so I stand up and bend over slowly. For the first three I just try to take it easy, rest when needed, and do like an ad-hoc version of yoga/meditation. I basically just stretch and focus on mellow things. Another really good one for relaxing is running my hands and especially feet under hot water for a few minutes, while gradually increasing the temperature.
Wow, i'm also on anti-convulsants, and just wondering would some of these be due to the side effects of the medication? That's something I've been trying to look into as once I've been switching my meds. I've wondered if I may be experiencing certain things as the side effects of my meds/ the AVM or it's "just me" =\ Thank you so much for replying!!