The Monday that just past was the worst day I have had in a while. I was at work and I had a grand mal seizure. I was rushed to to the hospital and I then had another grand mal seizure. The doctor did a ct scan and told me that i was getting flown out to Toronto for emergency surgery due to a blead in my head. Thank goodness it was a mistake and there was no blead going on. My dilantine levels were low and this is what caused my two seizures. I was about to get my licence back in two weeks and now I guess Iam going to have to wait another year, seizure free. I am so upset that I do not have a doctor in my town that is keeping a closer watch to my avm. When I was first diagnosed with my avm in 2008 I thought; this is not a big deal and I am strong but I am really starting to feel like like this avm is taking over my life. I am so happy to have found this site, just to rant and here others speak of their own avm somehow helps me a little.
I know how you feel! Before I got pregnant I would have up to 4 seizures a week!!! Now its only about 2 or so a month which is much better. I was on dilantine for about 4 months and had a hard time getting the levels to even out and they decided to switch me back to keppra but increase the dose of it. And its working great. I’m glad to hear that you didnt have a bleed I am sure it was a BIG relief!!! So are you still going to have the surgery? Will they only do it if you have a bleed?
Oh Amanda. That is so upsetting. Did you ever hear anymore from Toronto Western? You must be exhausted from all that and SO disappointed about the driving licence thing. My son just went thru that again too. He drove for 3 weeks, had some focal seizures from brain swelling and the doctor said, don’t drive anymore. grrrr…
I don’t even know how you are handling all of this without a really knowledgable doctor close by. If it’s any consolation, we feel pretty alone in this too and we HAVE doctors close by! It’s just that they can’t really do anything so you are pretty much left on your own! So frustrating.
Let me know if I can help at all. You can always rant to us.
Hi Amanda,
It’s really great that it wasn’t a bleed, but I’m sorry that the seizures took you off track from getting your license back. Take care.
Debbie
Amanda, i am so so sorry you had 2 seizures but i am so thankful there was no bleed. I really hope that you are able to find a doctor that is close by.
Take Care!
Hi Amanda, I am so sorry you had those 2 siezures and it has put your driving back for another year it must be so frustrating, but so glad it was not another bleed.
amanda,
you must be so frustrated…after going without a siezure for so long i know i hadnt had one for 7 months i thought i would never have one again then bang out of the blue all of a sudden…but i thank God it wasnt a bleed you must be grateful for that …God bless you and fingers crossed no more siezures xxx