Happy and Fustrated

Hello everyone :slight_smile:

I just wanted to let everyone know that I met with Dr.Sinclair in Montreal. He is a fantastic doctor and I am so happy to have found a great doctor! He told me it will be a very long process to get rid of the avm but we will start step by step.
Since February of 2013, I have had one to two seizures a month and they are now happening about every three weeks. I am wondering if any of you are having a lot of seizures and what do you think are some of the main triggers for the seizures? My medication is not helping with my seizures! I am getting very frustrated with these seizures and I just wanted to talk about it with others who are going through the same. Thank you for listening to me everyone :slight_smile:
I am grateful for this group!

Hi Brella,

I live with untreatable seizures. Meaning - none of the meds work for me and/or.. the side effects are too nasty for me. So I know what you are going through. Have you talked to your dr about trying a different med yet?.

The things that I do is:
1 - When I feel one might be coming on, I lay down. Sitting isn't enough for me, I have to lay down and REST. If I can sleep... that works the best for me.
2 - I watch my caffeine intake. Too much coffee or even soda can trigger a seizure.
3 - I pace myself with any physical activity I may be doing. Any strain on your body could be a trigger for you seizures.

I think it's a good idea to keep a journal and keep notes of what you were doing before the seizure came on. Write down everything... Including what you ate and what time, what activities were you doing (if any), what's your stress level - that too can bring on a seizure for many of us, did you get a good nights sleep or not? Try to figure out what your triggers are.

I hope this help you :),


I wanted to add.... I've been living with gran-mal seizures for 3 years now. I got to the point where I can tell when one is coming on and I can usually lower it's intensity and often stop it. Usually when I wake up in the morning, I can tell what kind of day I'm going to have. If I wake up feeling ok, then I know I'm good for at least a few hours. When I start to feel tired and/or shaky, then I have to lay down. If I don't, I will seize.

For me, it starts in either my left arm or my legs. And my vision starts to get blurry, along with mentally feeling 'not here'. Luckily, It starts off gradually and that gives me time to lay down and calm myself down. When it gets to that point (for me), I will normally go right to sleep in minutes. Once I sleep for a couple of hours - then I'm good again.


My main triggers have been exhaustion related. Not getting enough sleep, getting too much exercise, staying in the sun too long etc. etc. & there’s a group on here for AVM w/epilepsy, but I’m not sure how to send you the link. There are I think 16-20 different anti-convulsants out there, so don’t give up hope yet, it’s just finding the right medicine/s for you. I know how frustrating it is. Feel free to message me & I hope you feel better :slight_smile:

Thank you for your message :slight_smile:
I have tried two other medications and none of them are working. my new specialist suggested we try an EEG to see exactly which spot in my head is the seizures starting from.
Thank you for sharing your story with me. It’s good to hear from someone who is going through the same thing. I love this group, there is so much support here!

Hi :slight_smile:
Thank you for your message. I am trying to get these seizures under control and am getting to the point where I don’t know if they will ever stop! I try my best to keep positive but it gets hard at times. It is really nice to have others to talk to who have similar things going on. Take care and always stay positive :slight_smile:

I know. Nothing is more frustrating than seizures, except for maybe getting used to/dealing with the symptoms of the anti-seizure medicines...... We just have to keep hoping things'll get better, I know they will. If your's continue to worsen, they might be able to surgically correct it. They told me they could do that if mine got worse.....

They would surgically correct the seizures? I know they won’t remove my avm or even do embolisation right now. But, the doctor told me if he could find out which part of the avm is causing my seizures he might be able to start with the certain veins…like clamping them or doing the embolisation on only that part. Who knows :slight_smile:
Before you had a bleed did you know you had an avm?
I’m so scared to have a bleed, you must have been so scared while it was happening!
Did then remove the avm when they went in to stop the bleed?

No I did not know. I had never heard of an AVM before mine blew. And have they done an EEG to find where the seizure activity is initiating from?? And yeah they had to remove the AVM when they did my craniotomy because embolizations weren’t working. Don’t be scared of it happening. There’s nothing you can do about it unless it bleeds, and there’s a high chance it never will. & yeah my doctor said if my seizures got worse, they could surgically stop them.

my son had a avm rupture feb 2013 Toronto western did gamma knife on him and 2years to the day they did a mri and said it was shrinking the next dayhis avm ruptured and they gave him no chance and told us to say good bye the next morning he showed some improvement so he said he would remove the avm but he would not make it through the operation 11 months later he has 100 percent left arm back 20 to 25 percent left leg back he is starting to talk and can feel everthing on his right side he is doing great . please don't leave it they can do something for you if it bleeds or ruptures you could not fare so good we are here for you and my son now comes home from ccc ward on Thursday after rehab until sunday nights he is awesome and strong and getting stronger avms are nothing to put off god bless

I am happy to hear that your son is doing very well. That is great that he is having a good recovery. That is my biggest fear; that my avm will rupture. But we can’t let that get in the way of our life.
Take care