Epilepsy: Part of the landscape

I wrote this little thing about epilepsy a few years for the Fredericton Daily Gleaner. It seemed appropriate to share it again since I spent the afternoon at the Emergency after I had a seizure. (By the way, I’m okay now. There was a problem with the anti-convulsant medication I take being way too low in my bloodstream.)

If I could have my friend Les from Alberta tell you about the time I had a grand mal seizure (the full blown, convulsive kind of seizure), he would send you fleeing to the bathroom with laughter. He has a way of telling a story.

Saint John River at Martinon (Saint John) New Brunswick
Saint John River at Martinon (Saint John) NB

Seizures can be comical in a darkly slapstick way but they are spooky too if you don’t know anything about them. Seeing someone have that kind of seizure is like watching a break dancer with no sense of rhythm flaying about.

I was diagnosed with an epileptic condition about twelve or more years ago when I had that full blown convulsive seizure. In the time since, the single most frustrating thing I’ve found is the distance between what you know about your condition and what you guess at.

This is likely because epilepsy is about the brain and while we increase our knowledge of it, and of epilepsy, it is such a complex organ the more you learn, the less you know. With epilepsy, the information you have to go on isn’t the best, either. I can provide some information about my symptoms, but it is anecdotal based on what I remember experiencing and much of the experience is completely gone from memory. What I can provide is what I think may have happened and what I think it felt like.

There are also things like EEGs (electroencephalograms) that record and measure brain activity, and there are brain scans. They aren’t always the best indicators either, as my own case illustrates.

Still, some things are known and people with epilepsy are very emphatic about the fact it is a condition, not a disease. You don’t catch epilepsy. It’s not floating in the air like a winter virus.

According to the Canadian Epilepsy Alliance, for roughly 60% of cases, no cause is found. They do say this, however:

Common causes are head injury (eg. from a car accident); brain tumour, scar or lesion; brain injury during fetal development; birth trauma (eg. lack of oxygen during labour); aftermath of infectious diseases (eg. meningitis, encephalitis, measles); poisoning from substance abuse, like alcohol; and stroke. (Canadian Epilepsy Alliance)

Identifying epilepsy

Well known figures are said to have had epilepsy, like Socrates, Dostoyevsky, Napoleon and Joan of Arc. More recently, there is Prince and Neil Young. When asked about his epilepsy, Young said it was, “… just part of the landscape.”

I’ve probably had this condition since childhood (I was known for “fainting”) but the notion of epilepsy didn’t pop up until twelve years ago. I think this is because most of us have this equation in our heads: epilepsy = seizure = convulsions. The fact is many seizures are non-convulsive. I often sit perfectly still as if daydreaming when I have a seizure.

I think I’ve had seizures most of my life but didn’t know that was what they were. I simply knew them as “fainting.” My experience with a grand mal seizure, also known as a tonic-clonic seizure, changed that.

Do I have an epileptic condition?

In my case, I had the one convulsive incident (that I’m aware of) but it wasn’t until a few years ago here in Fredericton we could finally say yes, it’s epilepsy. I had symptoms and based on those my neurologist out west said I probably had epilepsy. But the EEGs were a problem. They all came back normal.

I’ve lost track of how many EEGs I have had over the years. With an EEG, they lay you down and cover your head with electrodes to measure brain wave activity. You relax, even sleep for about thirty minutes with ongoing interruptions for tests. My results were always normal.

I went through the same routine here in Fredericton. However, not satisfied with the unhelpful results, my doctor asked for a five hour EEG. The tedium of this makes a Royal Commission look lively. However, once it was over and the results came back there was an, “Ah ha! There IS an anomaly! Something ain’t right there!”

The results of the five hour test indicated there was something askew in my brain activity putting the symptoms I described in a clearer light and allowing the “probable” to be removed. I had an epileptic condition.

This may give you some idea of the vagueness surrounding an individual’s epilepsy, at least as far as identifying it goes. We can know a lot about the condition; it gets dodgy when trying to understand or even recognize it in a particular circumstance.

What do I do if you have a seizure?

When I tell someone I have an epileptic condition, they always ask the same question. “What do I do if you have a seizure?” They hear “seizure” and they picture a convulsive seizure.

But I usually appear to just “zone out” when I have one. (A friend once told me that I didn’t do anything but my face went white and my eyes rolled up in my head.)

What is a seizure? The Canadian Epilepsy Alliance puts it this way:

A seizure occurs when the normal electrical balance in the brain is lost. The brain’s nerve cells misfire … The result is a sudden, brief, uncontrolled burst of abnormal electrical activity in the brain.

I think of it as the power in the house going kerflooey.

Let’s start with what you don’t do when someone has a seizure.

  • Don’t put anything in their mouth, despite what you may have heard.
  • Don’t huddle around the person gawking like they are a traffic accident. Regaining consciousness and finding faces hovering above you is freaky, to say the least.
  • Don’t hold the person down.

As for what to do, here are a few things.

  • Stay calm.
  • Place a cushion, pillow or blanket under their head to help prevent injury.
  • Turn them on their side.
  • Clear the area (remove obstacles) around the person to help prevent injuries.
  • Time the seizure. If it lasts for five minutes or longer, call for an ambulance.

I recently read an article where the director of the University of Toronto’s Epilepsy Research Program mentioned that a large number of new cases were occurring in people 65 and older. They believe it is likely the result of small strokes.

On the Epilepsy Canada web site, they state:

Each year an average of 15,500 people learn they have epilepsy; 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.

Clearly, I’m not alone.

I may have made epilepsy sound like something horrible and aggravated that “spooky” business when I shouldn’t have. It isn’t spooky at all. Diagnosed, epilepsy is like many conditions, managed with drug therapy and really not an issue at all.

More than anything else though, I’d like people know that epilepsy doesn’t mean bizarre, out of control gyrations. Often, seizures go unnoticed by others because there are no convulsions. And if managed and controlled, as it usually is, there are no seizures at all.

It’s just part of the landscape.