Hi all! I'm a new member with a left occipital avm

Hi @Mike5 I searched for tinglying hands/lips on the forum yesterday and came up with feeds like this one: What type of TIA do u get?

So I’m guessing the tingling effects might be part of a small seizure. And I think in my case just as you anxiety doen’t help either. Yesterday I dind’t really feel anything else thank the tinglyness, not even the auras that I usually get, but I was so paranoid that something else was going to happen that I haven’t been able to sleep at all.

I think I’ll have to look for help or at least try to relax when all of this happens.

I hope you feel better now.

All the best.

The one significant seizure I had a few months after my AVM ruptured caused stroke-like effects but it wasnt a stroke… it was just my brain short-circuiting from the seizure and the dehydration.
the only other time I really get the tingling sensation is after an aura, and to be honest the doctors think it’s more of a panic attack then it is anything else; my panic attacks usually give me tingling in the head and lightheadedness.
My neurologist prescribe me some low dose Xanax to take when I get the auras as the anxiety attacks usually follow quickly after I have an aura. the Xanax keeps the panic attacks down. I only take the Xanax after I’ve had an aura or two as I don’t like taking pills unless I need to.
The problem is is if I don’t take the Xanax after I’ve had my first Aura and panic attack I tend to get auras for over a week as it seems to snowball on itself between the auras and the panic attacks so I have to stop them early on so I don’t have to deal with them all week long.

Same thing here @Mike5 I was really hesitant to take the Diazepam but if I don’t the symptoms get worse. Thank you for your advice and for sharing your experience, it helps a lot to have another opinion that reinforces the thought I had yesterday that the tingling might be part of the anxiety. It has lasted for about 24h this time and I hate it. It makes me so anxious, it’s like a vicious circle. Have a great summer if we don’t speak!

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You are right it can be a vicious cycle so if the diazepam helps don’t be afraid to take it as it’ll help break the cycle.
I always considered myself mentally strong before the AVM rupture… I don’t like to think of myself as mentally weak now, but the damage that has been done to our brain changes us a bit so it’s really not being mentally weak it’s just reacting to the hand we’ve been dealt and do the best we can.

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@Mike5 you are so right. It happened at work Yesterday. Coworkers were Asking what’s wrong but i find it so difficult to explain and not sound like a crazy person. Anyway. I guess we have to think more of ourselves and not focus on what others might think. I also try to share only the necessary and not too much.

Best regards!

That is the beauty of this forum… as the only people that really get it are other people with an AVM.
stay strong you’ll get through this, take care!

Yes I think think cognitive behavioural therapy could be very useful to help manage your fear+anxiety. CBT helped me when I had anxiety and depression in the months leading to my embolisation. It focuses on rewiring your thought processes.

It definently sounds like a combination of anxiety + post trauma from the day of your worst seizure/episode - which is a totally natural response. Definently if the lamotrigine doesn’t work for you, the vision+smell episodes could potentially be migraine related triggered by your AVM which could be controlled with alternative migraine medications. Regardless your neurologist will find a way to manage this - my neurologist had a plan to manage either scenario and I’m sure yours does too. I know it’s not easy in the mean time to cope with and the anxiety it brings on is not to be undermined or underestimated.

I try to focus on knowing it’s a temporary struggle, breathing in through my nose and out through my mouth and just closing my eyes and thinking of a calm place. Also knowing that if anything differant/worrying happens I can go straight to A&E/hospital to be taken care of by the specialists asap. That is what keeps my mind at ease but we are all differant so your psychologist will find a method that works for you.

Soon in time me and you will be AVM free and look back at this time knowing we can get through anything that life throws at us! :raised_hands: :relieved:

Love,

Corrine

Thank you @Mike5 and @corrine as always i value so much your advice and words of comfort :slight_smile: