Shifting perspectives on Epilepsy

By Trevor Park October 2011

I have been dealing with my epilepsy ever since I was 13. I started getting grand mal seizures lasting anywhere from 30 seconds to a few minutes. I would black out, and the seizures would leave me confused, sore and usually lying on the ground.

Having seizures changed my outlook on life. I realized: stepping into the pool, bath or spa was now a potentially deadly activity. I wouldn’t be able to skydive, ocean dive or rock climb. And say goodbye to driving, that great leap from adolescence to adulthood. The only thing worse than being the only kid in high school who can’t drive is having gotten your license and then having it taken away.

You have to be seizure-free for one year to drive. I made it a year—but not much longer. When my parents were away, I took their car and was driving to a friend’s house when I had a grand mal seizure, lost consciousness and smashed into a lamp post at 80 kilometers an hour. Like that, my driving days were over.

I wanted to know: how can I fix this problem? How can I lead a normal life? The neurologists I saw said the answer was taking anti-seizure medication. They told me, “Take these pills. And if they don’t work, we’ll try another pill. And another. And another.”

None of the pills worked for me. All they did was make me depressed and exhausted. With the medication, I slept 16 hours a day. I was getting worse, way worse, and my parents were doing everything in their power to help, starting with seeing every possible neurologist in Canada and moving on to Harvard doctors and hospitals in New York.

The doctors at Harvard recommended brain surgery. At the time I was open to doing anything to fix the situation. I simply couldn’t function in society—couldn’t study, couldn’t keep a regular job, couldn’t play sports or even hang out with my friends. My life had to change.

Then my parents heard of someone who took a different approach to treating epilepsy: Dr. Donna Andrews, a psychologist in California.

Dr. Andrews’ personal story touched me. As a kid, she had suffered from seizures and was told at the age of 18 that she would never resolve the massive misfirings in her brain, that she would have those seizures forever. Andrews couldn’t help but wonder: if her brain were so messed up, as her doctors claimed, then why wasn’t she having seizures all the time? What was the difference between the times she was healthy and the times she was having a seizure? She figured there must be a trigger, something that sparks the seizures to erupt.

Today she has been seizure-free for over 40 years—and with no medication.

The question, then, was who would you listen to: someone who had never had seizures and offers you drugs in the hope that you’ll stop convulsing or someone who has been through this illness, who knows exactly what you are going through and has actually overcome her problem?

I flew out to Santa Rosa, California, to meet with Dr. Andrews. That meeting changed my life.

Donna shifted my perspective on everything. She encouraged me to do my homework, to study epilepsy and its treatments. She said never put something into your body if you don’t know what it is. And she said first and foremost that epilepsy was my problem, and getting healthy was my responsibility. I had to figure out my body. And I had to find my triggers.

Dr. Andrews had me asking myself new questions: what was I doing when I had these seizures? What was the reason they came at these specific times and in these specific locations?

With her help, I started learning relaxed breathing and moved on to meditation. I learned that the source of my seizures came from the left temporal lobe of my brain. Whenever I would feel odd—the sign of an oncoming seizure—I would breathe slowly and deeply and use my finger make little circles on the palm of my left hand. This would awaken the right side of my brain and, to my amazement, would prevent the seizure from taking over the whole brain.

With practice, I became better at recognizing the feelings that precede my seizures, like a sense of lightheadedness, where suddenly everything seems off. Other times the words that come out of my mouth are just gibberish. In the past, that gibberish was always followed by losing consciousness.

Not anymore. Now, when I hear that gibberish, I breathe and start making those little circles on the palm of my left hand. By doing that, in this last year I have prevented over 20 seizures.

My health hasn’t been perfect. Since meeting Dr. Andrews 15 months ago, I have had three seizures. But each of those seizures was clearly my fault: I didn’t take my meditation or took a lower dose than I was supposed to. Other times I partied hard and drank heavily, which didn’t help.

That said, today I couldn’t be happier. I have a much greater understanding of my epilepsy, which makes it far less scary. And I can feel my life moving in the right direction. Every time I prevented a seizure I felt my self-confidence rise. I still haven’t gone skydiving or ocean diving in Asia and Australia, two of my “bucket list” goals. But with my seizures coming under control and my health continuing to improve, I know that soon there will nothing that I can’t do.