What now?

I am so overwhelmed with everything that is going on. I worry every day about a seizure or a bleed. I'm afraid to do anything that would cause any of those symptoms to happen. AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHH
Sorry had to get it out. The waiting is worse than the knowing. While the Keppra is preventing the seizures, I am supposed to sit and wait for my Dr's appt to see what's next. My right eye is still messed up my face is still numb and I still have weakness on the right side. Not to mention the stress. Any ideas? Are their any significant questions I should ask my Dr?

Hi June. Trust me…we all know the OMG I cannot believe it is happening to me moment! I think this link might be able to help you…

Thank you for that info. It was very helpful

Hi June,
As Barbara said, we know how scary ALL of this is!
Be extra kind & gentle with yourself during this time & without overwhelming yourself, also learn as much as you can about cavernoma's (also called cavernous malformation, CM)
I have multiple CM's & remember all too well how I felt when first diagnosed & the uncertainties & fear it brought...
Take care,

Barbara's so right we have all been there although every AVM journey is unique (ain't that special). Yes it sucks, and it has to be very hard but what seems to help is two things... venting when you have to (don't be afraid to do that... wait you did), and friends that understand. Last count we had over 4100 members. Hang in there. We have your back. They offered the questions to ask your doc link...that should help too. Best of luck to you! :J


First of all the most important thing to keep in mind is that you, like all the members of this site are lucky to be here today. We have no idea just how many people out there had AVM's that went unnoticed until the person was suddenly no longer in this world. One of the scariest things about AVM's is that they usually go completely unnoticed until a problem occurs. You are lucky to have received the warning signals, and had the intuition that something serious was going on.
When I was first diagnosed with my avm after its bleed, I was 19 years old and the neurologist explained the diagnosis to my parents before they broke the news to me. The first thing they told me was that my actions- whether I was jumping in the air, laying down, or spinning in circles, will not affect the avm. You had the avm since you were born, and your daily actions and activities never affected it. It was a matter of time before it started acting up to the point that the symptoms became serious enough.

One of the most frustrating aspects of an AVM is that the treatment process involves lots of waiting, demanding much patience. Consider these next 2 weeks a gift- you know what is causing your symptoms, the keppra should be helping with the seizures, and you have the time now to gather information so that you can benefit as much as possible from your Dr's visit.

We're all thinking of you!


Birdie, unfortunately patience is not one of my strong points. I have always had nervous energy and can't sit still for long. For the last year I felt tired and sluggish. I just want to get back to my old self and enjoy the things I used to enjoy doing. WAITING is going to drive me nuts. I agree with you on the point of gathering information. It is good to be prepared for my Dr visit. The thing is I am causing a brain overload with the information. Not all of it is the same and I am not sure which site is better as far as information. It is all so very confusing. Thanks for responding. Thank you for your support. Wishing you the best.