Friday, June 6, 2014

They're Getting Stronger

Let's get right to it.

I'm taking a medication called Sabril. It's billed, to us anyway, as a fairly dangerous medication as far as side effects go. I'm horrible at side effects, so Sara and I were very hesitant. The major possible side effect is peripheral blindness... permanently. So, I better be damn sure that this is going to go well, because last year didn't go so well with the Steroid and IVIG treatments.

No vision problems to report, but my seizures seem to be getting stronger. They happen just about as often... three a week on average, but it's not just the seizures I'm worried about, it's the postictal (seizure hangover), and interictal (period between seizures) states that I'm most worried about.

My last "bad" seizure was about two weeks ago, I've had seizures since, but not to this magnitude. 

It all started in the kitchen. I felt the aura take hold... I started seeing lost pictures, and hearing voices in my head from when I was younger. I could taste or smell (I can't quite figure out which one) play-dough in my mouth. I remember Sara telling me to sit down at the kitchen table (she had just came home early from work). 

The next couple of steps are mostly from Sara's account, because my version is a little hazy.

After I thought the seizure was over, I got up from the kitchen table. Sara was talking in the background, I would later find out that it was the hospital that she called. I thought that we were going to go out for the afternoon because she had the day off, so I went for my coat and hat.

After I got ready to leave for the afternoon, I sat down in the living room, waiting for Sara to finish her conversation. While on the phone, she came to me and kept asking me to smile. "Smile big!" she said. I could only smile with half of my face, the other half was temporarily paralyzed, something known as Todd's Paresis (this has never happen to me before).

A couple of minutes later, when Sara was just finishing her conversation with the hospital, I came to realize that I wasn't in the kitchen anymore, but somehow I was in the living room with my coat on. My body was still very weak, but the one thing that I immediately remember is becoming very emotional. 

Note: this is VERY hard for me to talk about, let alone write for everyone to read.

After "awaking" in the living room, I was very confused and started crying. I apologized to Sara profusely for having epilepsy, and kept telling her that I thought people would call me names if they ever saw me in this state. Every minute that went by, I started becoming more aware of what was going on around me, but I couldn't stop crying. I just couldn't. Even now, I'm very nervous as to how you will all view me after telling this story... maybe it goes deeper that just the postictal state.

After awhile, Sara brought me some Ativan, a rescue medication to stop me from having anymore seizures. It basically knocks me out for hours. It did just that. I would wake up hours later with a big headache and many, many questions as to what happened. I could barely speak and form sentences, but I knew what I wanted to say... I just couldn't get it out.

Days after this seizure, I still had trouble putting together words and thinking quickly. My speech was very bad, but by now Sara had learned how to speak "Jeremy" after I have a seizure.

My seizures since have been "smaller," as to say shorter with less recovery time. I'm still getting very emotional after each seizure. Very humiliating.

I hope just reading this is the closest you all will ever come to experiencing this type of horror.