My History of Seizures

Last week I promised to expand on a topic of your choosing. I thought maybe y’all would want to know about smoking pot on TV or getting arrested for streaking. But in fact far more people expressed an interest in this item:

I was epileptic, with serious seizures, but I seem to have outgrown it about ten years ago.

The people have spoken! Herewith, a brief history of my seizures.

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They didn’t start as seizures. They started as severe migraines. I’d see a bright shining light, lose a good chunk of my field of vision, vomit and get a bad headache. Sometimes lying down in a dark room would make them go away. These episodes began when I was a young boy of — what, maybe ten years old? It was pretty scary.

Then one summer at camp, when I was thirteen or so, I fell out of my bunk bed and cracked my head on the floor and had a full-blown seizure. We’ve never known if I had the seizure first and therefore fell out of bed, or if the fall and head injury triggered the seizure. I fell from the top bunk, and my head was concussed.

Thousands of Americans get epilepsy each year in car accidents, smacking their heads on the dashboard. Or at least they did in the past. Perhaps airbags have slowed that particular injury down. But the point is that head injuries can cause recurring seizures.

Epilepsy is like an electrical storm in the brain. Neurons can be thought of as tiny electrical switches in the brain. Each neuron communicates with several other neurons. When neurons misfire, they are essentially miscommunicating to their neighbors, who may then pass on the miscommunication to their neighbors, and the whole thing can spread rather quickly. Thus a handful of misfiring neurons (as few as seven) can trigger the electrical storm we know as an epileptic seizure.

That’s my layman’s understanding, based on reading I did long ago. I have resisted the temptation to do further research while writing this.

After that fall, I continued to have seizures on an irregular basis for the next twenty-five years. These were classic gran mal seizures, which means full body convulsions and complete loss of consciousness. However, I didn’t just fall to the ground without warning. I had the good fortune to have an aura — that is, I could tell when a seizure was coming on ahead of time. About half of epileptics have auras, and they can be life-savers, quite literally.

Auras come in many different forms. Mine was exactly the same as the migraines I used to have before the fall. A point of light would appear in the middle of my field of vision. It seemed infinitely bright but infinitely far away and shining with all the colors of the rainbow. It would seem to tug my eyes to the side. I would lie down and cover my eyes. Sometimes the spell would pass, but usually I was beset by the strange sensation that all my memories were rushing past me, as if I was suspended in torrent of memory, but unable to apprehend a single one. I’d reach out and grab one (mentally) and hold onto it, but still I couldn’t examine it. The chaos of the rush was too great. But I’d hold onto it with the notion that later, somehow, I’d be able to figure out what it was. It got harder and harder to think clearly, and the sense of rushing chaos increased, until finally I lost consciousness.

I woke up feeling like I’d run a marathon, or more like a marathon had run over me. I’d have a crushing headache, and half my field of vision was gone, like tunnel vision but just over to one side. I’d have to sleep it off.

The seizures came almost randomly, but some patterns emerged. Coming out of a hot shower into a cold room seemed to be a trigger. I almost never had seizures when I was out and about in public places. In fact, I had a seizure once in the high school cafeteria, and I think that was the only time I ever had a seizure in public.

Obviously I didn’t enjoy them, but I think my seizures were even scarier for other people than they were for me. After all, I wasn’t mentally there once the convulsions began.

I saw a neurologist, a Licolnesque Hoosier doctor named Fulton. I liked him. But the truth is epilepsy is a very mysterious thing, the brain a very complicated organ. We don’t really understand the malady. We just throw treatments at it and hope something works.

I got lucky. The very first drug I tried seemed to effectively suppress my seizures. That drug was Dilantin, also known as phenytoin. I took it for many years, and once the correct dosage level was established I tended to have seizures only when I forgot to take my medicine.

You might think I’d never forget to take something so important to my health and well-being, but I’ve always been fairly absent-minded. Forgetting is like second nature to me. In fact, the bizarre sensations that accompanied my seizures, previously described, felt like memories draining out of me and disappearing forever.

Once in college I woke up early one morning in a very disoriented state… My head ached, I couldn’t remember what day it was or what I’d been doing the night before. Nobody was around Greene Hall, my dormitory — it was silent as a tomb. When I looked in the mirror, I discovered that I had a black eye.

More confused than ever, I wandered over to the Student Health Center only to find that it was Sunday, and the Health Center was closed. Still in a daze, I made my way back to Greene. By this time some of my friends were awake, and I learned that I hadn’t been seen since Friday night.

I must have had an epileptic seizure during my sleep. I spent all of Saturday in a delirium. A few friends had stopped by my room and knocked on my door, but there was no answer. At some point, during a seizure no doubt, I must have pounded my face against the floor. Now that’s what I call a good time!

This was the beginning of a pattern that continued after college and into the nineties. I rarely had seizures, but when I did, they seemed to be getting more severe. More to the point, I seemed to be having multiple recurring seizures, one after another. Scary, because sometimes epileptics can die from having seizures that never stop. Sometimes I would have to be hospitalized. They’d have to administer the phenytoin intravenously because I couldn’t keep the pills down.

Shortly after I got married to Xy, I had one of these episodes. When I finally regained consciousness I couldn’t remember our wedding! Or so Xy tells me. That was just a short-term disorientation, though pretty frightening to her.

Sometime in the mid-nineties I met Cynthia Bretheim. Among her many talents was massage therapy. When she learned of my history of seizures, she was eager to try out a new therapy she’d learned, craniosacral massage. I was pretty skeptical, but on the other hand who doesn’t enjoy a massage? She gave me a series of treatments. I painted her office for her by way of payment.

Years later, much had changed. I’d gone to grad school, moved to New Orleans, bought a house. It dawned on me one day that I had not had a seizure since moving to New Orleans, and perhaps not for a long time before that. I calculated it had been at least five years without a seizure. In that time I’d surely forgotten to take my pills any number of times. But no seizures. Hmmm.

So I started stepping down my dosage. I did not consult a physician. I just did it. And finally I was off the phenytoin completely. To this day I have not had another seizure, and it’s been over a decade now. I knocked on wood after typing that.

To many people this seems astonishing, miraculous, but in fact it’s well-established that many people simply grow out of epilepsy. I think the typical pattern is having seizures in the adolescent years and growing out of them as the person enters adulthood. So maybe I was just a late bloomer. Or maybe Cynthia’s massage therapy had something to do with it. I really don’t know. I’m just happy not to be popping pills right now, and I hope the seizures never come back.

But any time I see bright spots in my field of vision, such as after looking at a light bulb, I tend to get a little nervous.

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Whew. That was lengthy. If you still want more, see also this poem and this video, both attempts to capture the feel of having a seizure.