Ten seizure-free years and counting…

This might not be the actual date, but it’s the one I’ve chosen to celebrate the 10th anniversary of my last “involuntary loss of consciousness.” I haven’t had a blackout in a decade. My anti-seizure meds seem to be working…

It’s strange that I can remember the exact dates of my two generalized tonic-clonic (grand mal) seizures: 9/30/91 and 1/2/02. Beyond those, I’m lucky if I can pin them down to a specific month. Except for this one, of course. April 16th was a special date, primarily because Minnesota suspends your driver’s license for six months after an involuntary loss of consciousness. If my last seizure had happened after April 19th, that six months could have carried over past my 26th birthday and I would have had to retake my driver’s test. At age 26.

So when the necessary time had passed and it was a few days before my birthday, we were scurrying around to fill out paperwork so I could get my license back without sitting in a room full of teenagers for an entire day, facing a constant battle of wanting to bash my head against a table, hopefully leading to a voluntary loss of consciousness.

I don’t think I’ve written about my seizure in ’02 before, so I’ll try to give you all an abridged version of the story. Keep in mind that some of this is a little fuzzy, especially the order in which stuff happened, but 1 1/2 weeks in the hospital tends to blend things together a bit.

I was officially diagnosed with epilepsy during the summer of 2000, about a year after my first blackout. And I don’t think I’ve written about that, either. The day it happened, I was eating a bowl of cereal for breakfast with my little brother Justin at the table. I was just wearing a pair of soccer shorts, but he’s my brother (and a college student), I’m sure he’s seen worse.

All of a sudden, my head felt fuzzy. And then I realized I was wearing a t-shirt.

I asked Justin what just happened, so he explained that I stood up and said, “I’m cold”, then went to my room and came back wearing the shirt. When I walked up to the table, I looked down at my bowl of cereal and asked him, “Is this mine?” He confirmed it, so I started eating again. And then eventually asked him what just happened.

You’d think that would be extremely scary. It might have been, but like I said, my memory is a little fuzzy. What I do know is that it became part of life. Occasionally, I’d have a blackout and it would freak everyone else out a lot more than it did me. Maybe that’s because they had to witness what I said and did, whereas I just had a mild sense of vertigo when it was over.

The reason I finally told the doctor? I was making the final preparations to go hiking in Philmont Scout Reservation with Justin and our cousin, Alec. I went to get my physical and was checking out just fine until I asked if it would be a problem that I was having occasional blackouts. There went my hike in Philmont.

The doctors at Minnesota Epilepsy Group figured that my body had become acclimated to dilantin after so many years and it wasn’t working as effectively anymore. Thus, we began the process of what I called “medication hopping”: if one treatment didn’t work, we’d hop to the next. It’s my personal belief that one of the medications (or a combination or maybe all of them) is what screwed up my long-term memory.

We tried various dosage amounts for… I think it was four different medications. There was even a period of time when they bumped me up to toxic levels of one kind of drug, but the doc thought it would be okay because I was “a big guy.” Thankfully, we gave up on that fairly quickly when it wasn’t working.

Eventually, the doctor asked if a blackout every two months would be good enough. Seriously. He asked if that would be okay. And it wasn’t okay, so he scheduled me in to spend time in the epilepsy ward at United Hospital in St. Paul. Mind you, I was in there during my winter break as a first-year law student, so… yeah, not the kind of break I would have liked.

The reason he wanted me to stay there was so they could put a skullcap on my head, push a bunch of pointy sensors against my skull really hard and watch my brain wave activity to see where the problem area was. With that information, he’d have a better idea of how to treat the problem and which medication(s) would work so we could stop medication hopping.