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Dan’s Story: Running with seizures and not even know it

Finish lineDan’s personal experience running with seizures.

Dan’s personal epilepsy story was submitted to Living Well With Epilepsy to share his own experience.

Knee tendinitis, ankles that sprain easily … most marathon runners are nagged by a particular body part that is prone to injury. My nag is my head. I have epilepsy that, for whatever reason, tends to be provoked by running. I’ll be in the middle of a run, cruising along, feeling great, and – bam! – suddenly have a seizure. Bummer when you’re trying to set a personal record.

The mechanical act of running probably isn’t the culprit, but some byproduct of it (electrolyte imbalance?) irritates my neurons. The seizure starts as a déjà vu sensation that lasts 5 seconds, and then my brain checks out entirely for 1-2 minutes. I can fool you during those 1-2 minutes because I look conscious and normal … until you try to talk to me. Then I stare blankly like a dog listening to a physics lecture.

It’s funny what you forget

Remarkably, I blew off these seizures for a decade, 2003-2013, before I realized how severe they were. I spent a decade thinking they were a minor nuisance at most.

I blew them off because I was only aware of the 5-second part. I thought these seizures caused me to space out for 5 seconds and nothing more. They seemed entirely different from seizures that I had as a child, when I had 200-300 complex partial seizures that caused me to lose consciousness completely.

But it turns out the only difference is what my brain remembers.

Last year, eyewitnesses gave a play-by-play description of my altered behavior during a seizure, and it became apparent that my seizures hadn’t changed since childhood except now I’m unaware of being unconscious. I witnessed this for myself when I was hospitalized last October, as hospital videos showed seizures that I thought lasted 5 seconds but actually lasted several minutes.

It’s a little creepy watching a video of yourself having a seizure that you don’t remember. Honestly, it took 3 months for the shock of it all to settle in. Prior to last year, I was aware of these 5-second seizures that occurred during runs, but I still viewed epilepsy as a thing of the past because I hadn’t had a “real” seizure (i.e., lost consciousness) since 1997, as far as I knew.

Then, after the shock had settled, I started training for my next marathon.

Running give me a sense of empowerment

I love running, and I’m surprised people think I would give it up because of epilepsy. Ironically, I’ve always joked that “your brain needs to be a little screwed up to run a marathon.” Marathons come with a lot of blood, sweat, and lost toenails, and to endure those you need a body of steel or a twisted mind. I have the latter because I’m a masochist who enjoys pushing my body to the edge.

I also run because I don’t want to let epilepsy interfere with activities that I love. Anyone with a chronic health condition can relate to that sentiment. Outsiders often think it’s crazy for someone with Condition X to engage in sports or other hobbies that are “too risky,” but it’s not crazy when it’s part of your day-to-day life. To me, seizures are no different from a tight hamstring; it’s a physical hurdle that might weaken my performance but doesn’t preclude my performance. Every athlete faces some hurdle, and epilepsy is simply the card that I drew.

There are slight risks when I go running, but if I calculate the risks versus benefits, it’s not even close. Running brings a great sense of empowerment. Completing a marathon makes me feel like I can accomplish anything. A few cranky neurons and a couple minutes of memory loss is a small price to pay for that feeling.

My 8th marathon will be on May 4, 2014, in Vancouver, Canada, where I also ran my 7th marathon in 2013. I ran last year’s marathon when I still thought epilepsy was in my past. I’m returning to run it again because Vancouver is a phenomenally beautiful city and to symbolize the fact that – as different as my life feels this time – the things that matter to me are still the same.

What are your thoughts on Dan’s experience? Leave a comment below.

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  1. Gary
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    Dan,

    You sound familiar. I have run two marathons and both times had several seizures during the run. This past summer I had surgery to remove the seizure part of my brain. My running is better. It is a positive difference when the body feelings are not telling you that you are going to have a seizure.
    Thanks so much for the description of your running with epilepsy. Glad to know that I am not alone……

    Gary