What can you do when you can’t do anything except wait for the next seizure to happen? Sometimes you can’t do anything except buy into depression and fear. Some people go the route of denial, and act as if nothings happened. Sometimes that works, sometimes it ends up in tragedy.
Wrecking a car while seizing is not a good thing, I wear an impressive scar on my forehead to prove it. But that was a long time ago, before I learned the value of listening to the neuro when he advised that I don’t swim, work on ladders, or drive until we were able to get a handle on my seizure activity again, and again, and again.
Another thing I learned was not to depend on my mind. Every time we went to the doc he’d ask about my seizure activity and my emotional state. Most of the time I could only answer with vague comments about how I’d still been having seizures and I’d been pretty down. Like he didn’t already know that.
He needed to know that in addition to having grand mal seizures, I was occasionally feeling like my fingers were being inflated with air, and the puffiness moved right up my arms. Or for some strange reason I’d feel kind of blue, the color blue, and be surprised when I looked at my hands and didn’t see blue fingers, or at least a blue aura around them. Sometimes half my face would become icy cold, then in a few minutes it would pass.
It was time to listen to my doc again. It was time for me to start writing this stuff down as soon as it happened. It was the beginning of my involvement in being more than a bystander in the treatment of my condition.
If I hadn’t been writing this stuff down, my doc wouldn’t have known half of the seizure activity that I was having. He wouldn’t have known about my emotional ups and downs, which were also seizure oriented. I had no idea that the confusion I was experiencing had to do with complex partials until I documented it for him.
This is going to be lots harder for parents of children with epilepsy to use, but even with them, if you write down what you see, you’ll be better able to inform their doc about what they’ve been doing. Our minds just aren’t that reliable in highly stressful situations. The police take notes all the time, we have to learn to do the same.
Learning how to keep a journal was the best tool I ever learned to use when it came to helping my neuro manage my epilepsy, I wish I’d have picked it up sooner.
There’s more to write on this idea, it’s a rich vein that I shouldn’t turn away from yet. I’ll get back to it the next time I write.
my son isaac as just turned two he has epilepsy,he has atonic and myclonic seizures,I’m trying to understand how he feels and keep note of things to tell the dr but as he is just turned two a month ago,its hard to know wether he is starting terrible twos and thats why his personality has changed or part of aeds (sodium valporate and lamictal)he comes to me like he is scared of something and there is nothing in room.I’m going to add you to my blogroll so I can try and understand how he feels x
With everything he’s going through I’d bet the little guy’s scared of a lot of stuff right now. Write it all down Mom. Give it to his doctor the next time you see him and let him give you some direction on it.
I wouldn’t edit out anything as being terrible twos.
I took your advice and told the dr about my sons behaviour and it’s pointing towards an epilepsy syndrome that they wouldn’t have explored if I’d not mentioned other things. Thanks x