Hallo everyone. I am new here and am still learning about my condition. I have what is called a posterior frontal AVM which was diagnosed 8 months ago (I am 49) after I had a seizure which was the scariest and most painful thing I have ever experienced. I am still learning about AVMs and am having trouble understanding why at my age it has just surfaced - I lived a normal life until this happened.
I am so sorry to read some of you have much worse problems than I - and even bleeds, which is the worst thing that can happen. That makes me a little bit guilty about writing this because it seems so less bad than some of you are going through.
They started me on Keppra and after two tries at this I gave up on it as it was making me suicidal. I lived on without medication until I had my 3rd seizure. In hindsight all of these seizures occured after a few beers and all happened within about 48 hours of my nights out. I have not touched alcohol since I made that connection, I can tell you!
So far all the seizures have started with a jerking left leg and after about 30 seconds my entire left side seizes up causing me to scream in pain - it is almost a different state of conscienceness between the pain, the fear and loss of any control. I don’t know if I pass out or not. It is short-lived and I come round usually with cramps in my left leg and arm.
This has made me paranoid about having another seizure in a public place or at work. I am always thinking about my left leg now and any strange feelings in my leg start to make me extremely anxious to the point where I am afraid to leave the house. I still go to work (a colleague takes me) but sometimnes the fear takes over there - my anxiety was so bad once that they just took me home. No seizure happened that day. Keeping warm and lying down makes the anxiety and “strange feeling” slowly go away.
After that I wanted medication and am now on Lamotrigine (only 50 mg, steadily building up each two weeks by 25mg). I have had no seizures since (about a month now).
I am waiting on the treatment which looks like it may be radiotherapy. Surgery is ruled out because of the location of my AVM next to nerves.
Because the seizures are so dramatic (I haven’t even thought about bleeds or other consequences) I would like to know if other members have simialr fears to me. The meds make me twitchy and wobbly which doesn’t make me feel like they could prevent any seizure but so far so good.
In my case I just try to eat fruit and veg as much as I can and live healthily but I have good days and bad (fear-wise). I have been reading about lamotrigine here and think it is probably the way to go.
I have so many questions but the ones burning the most are:
is diet important?
Is exercise ok? Like jogging, cycling?
Does anyone have a similar situation to me and if so, how do you cope?
Feeling tired makes me feel worse and the lamotrigine makes me sleepless at times, desparately tired at other times. My neurosurgeon says that I should avoid “that jetlagged feeling” if possible and rest well.
Like I said, I know others have worse things than I do and my heart goes out to them. If I am asking old questions, ones asked many times, then forgive me.