Running With Epilepsy
For Amanda Plomp, the rewards of running outweigh the risks.
Calgarian Amanda Plomp knows she could have a seizure at any moment during a run, but epilepsy hasn’t stopped her from racing around the world. For someone familiar with losing control of her body, running has become a way of harnessing its power and pushing its limits.
Amanda Plomp’s life changed the day after she turned 14. She collapsed in the shower and had a tonic-clonic seizure. Her muscles stiffened, then convulsed, and she lost consciousness. Her father pulled her out of the shower and she eventually received a diagnosis: epilepsy, the brain condition that causes seizures. She realized she had been having more mild, myoclonic seizures – the kind that cause muscles to jerk a bit – but hadn’t thought much of them.
Though her parents were supportive, people at her school in St . Albert (a small city near Edmonton) were not. She recalls being pulled out of physical education class and told to write a paper about soccer instead of play it with her classmates. Worse still, friends abandoned her. She was confused because her peers hadn’t witnessed a single big seizure. Later, she found out they thought she was “faking it.”
Plomp switched schools and made new friends. She switched medication and could even drive for a time because her seizures were so infrequent. Then she found out the medication was causing liver damage, so she stopped taking it. She had many seizures during her university years and by 2011 she was having them multiple times a week. That year, she went through 11 different medications, which came with debilitating side effects. Some caused vertigo so intense she couldn’t walk or sit up. Another caused her to gain 60 pounds. Finally, she found one that seemed to work well.
About a year later, Plomp’s life changed again when she started running. She eased into the sport slowly, as her lunchtime walks in Calgary gradually turned into runs. She ran some 5ks and then surprised herself by running her first 10k in 53 minutes, without keeping track of her mileage or doing any formal training leading up to the race. She just ran when she felt like it and when she had the time.
She’s now 33 years old and a regular at road races – especially 5ks and half marathons. She ran the Victoria Marathon in October of 2017 and the Banff Marathon in June. She plans to travel back to Victoria this fall and compete in races in Halifax and Scotland.
When seizures occur, Plomp loses control of her body. But when she runs, she’s in control – of her route, pace and distance. She also finds the freedom and independence of running alone empowering.
“At some point with running, I stopped being epileptic and I became a runner,” she said. “I didn’t know that changed, but I realized that it was a bigger part of my life than my epilepsy is and it was something I was choosing. That’s what made it more important. I could choose to run.”
Of course, epilepsy does interrupt her runs and races on occasion. The myoclonic seizures can cause her to stumble or fall and her shins and knees are scarred from being scraped and shredded so many times. She started wearing tights or other coverings so race organizers wouldn’t ask her to stop running after a bloody fall.
When tonic-clonic seizures happen mid-run, that’s a lot scarier. She woke up after one seizure on a hill in Calgary, glanced at her watch, and realized that she had been lying on the ground there for 25 minutes. Likely, she had hit her head and had a concussion. No one had stopped and stayed with her until she woke up.
Plomp’s new running habit worried some of her friends and family members, who urged her to run with a buddy, or at least use tracking apps on her phone. Though she understood their concern, she argued that risks were inherent in many of her daily activities. Every time she takes a shower, for example, she risks having a seizure and sustaining a head injury from the fall (She’s had many seizures in the shower). One of her worst seizures happened while simply standing in a parking lot, talking with a friend. She fell forward and hit her head on a block of concrete, knocking out teeth.
Plomp’s neurologist, Jagdeep Kohli, gave running the green light after having a discussion with her about the frequency of her seizures and the precautions she takes. (Though she prefers to run alone, she does inform people when she’s departing and when she expects to return). “Really, it’s about judging the risk,” Kohli said. “If she was into mountain climbing, I’d say, ‘I don’t think that’s a good idea for you…’ but something like going out and running? Even though there are some risks involved, comparatively, with other activities, the risk is on the lower end of the spectrum.”
Since she started running regularly, Plomp has had fewer tonic-clonic seizures per year, going from monthly incidents to just three in 2016. Her mileage, on the other hand, has gone up, and she plans to run an ultramarathon someday. Kohli said it’s unlikely running itself reduces
“RUNNING’S BEEN A TANGIBLE WAY FOR ME TO SEE HOW FAR I CAN GO EACH TIME AND HOW MUCH FURTHER I CAN GO.”
the frequency of seizures, but it can help control stress, which can be a trigger for many people with epilepsy.
Though Plomp’s seizures occur less frequently lately, she still gets headaches and muscle spasms and lives as if she could have a serious seizure on any given day. She’s tied to a strict, twice-a-day medication schedule and signing up for races is always a gamble. Although seizures themselves are scary, the fear of experiencing them can be much worse.
“That fear is always there,” she wrote in a blog post last summer. “When I have commitments, when I have plans, when I say that I will be somewhere, I recognize that nagging worry in the back of my mind that reminds me that I have a condition that could stop me from being there.” People with epilepsy also often struggle with side effects like vertigo, nausea, fatigue, depression and anxiety.
Epilepsy is always on Plomp’s mind, but for a woman who was once told she would probably never live on her own, running has become her way of rejecting life’s limitations and moving forward. She had a seizure in June 2017, but that didn’t stop her from being a bridesmaid or running a half-marathon in Banff a few days later.
Last year, she started a blog, which draws international readers, and she has spoken at an epilepsy awareness conference in California about epilepsy and athletics. She’s meeting other athletes with epilepsy and hoping to inspire young people who have the condition. She doesn’t urge people to start running or adopt her lifestyle, recognizing that anyone with epilepsy should consult with a doctor before embracing a new form of exercise, but she does want more people to know running with epilepsy is possible. Despite the risks, she keeps going. “Running’s been a tangible way for me to see how far I can go each time and how much further I can go.”
Madeleine Cummings is a journalist based in Edmonton. Her column appears regularly in Canadian Running.