March 2, 2021
Living with epilepsy can be 'just another day'
For Nicole Janssen, daily life starts out in much the same way as many self-made entrepreneurs. Rise before the sun, engage in superhuman feats of cardio endurance on a spin bike, put on the parenting hat to get the kids off to school, then start a 10-hour day as head of a nationally recognized tech startup.
“It’s the same day I used to have,” she says. “I just maybe don’t end it with a glass of wine.”
It’s taken a while for Janssen to get back to this state of equilibrium. Two years, to be exact, ever since March 1, 2019, when her husband woke up in the middle of the night to find her having a grand mal seizure.
“The first I knew of what was happening,” she recalls, “I was already in the ambulance. And I was terrified as to why I was suddenly waking up there.”
Hard months, hard choices
The months that followed were hard. Before anyone even mentioned epilepsy, a doctor revoked her driver’s licence. Then she was told to choose one of three separate drugs, each with its own unappealing side effects.
"One is very likely to cause you high anxiety and depression,” she recalls the doctor explaining. “The other has the potential for a life-threatening rash. And the other one makes you have slower cognitive thinking, and you may experience some tiredness.”
She opted for drug number three. A month later, she was already having regrets.
“I couldn’t remember anybody’s name. I couldn’t conjure up words. I felt like I had lost myself,” Janssen says. “I mean, I’m the CEO of a company that’s growing rapidly and I was embarrassed to even talk to my staff.”
Stuck in what seemed to be a lose-lose situation, she considered weaning herself off the drug.
“It became this situation where I wasn’t being honest with my neurologist. I felt, if I shared everything, I risked losing even more independence and my ability to live my life.”
Experience offers insight into epilepsy
Janssen recently joined the epilepsy committee at the University of Calgary’s Hotchkiss Brain Institute (HBI) at the Cumming School of Medicine to offer her insight into how care providers, friends, and family can make it easier for new patients to navigate their diagnosis and manage early treatment plans.
Janssen recalls the nervousness and concern amongst her family, friends and coworkers, about the possibility of another grand mal seizure.
“Everyone on our staff was very supportive, but they were scared,” she recalls. “I had one staff member who reprogrammed one of those Staples ‘easy’ buttons such that if I hit the button, a message would go out to the entire company to say ‘Nicole needs help.’ I’ve actually accidentally hit it twice and the whole company did come running so that was really awesome and supportive of them, but it also showed me that my team was scared.”
It has been almost two years now since that terrifying night when she woke up in an ambulance. Janssen has made some lifestyle changes to manage stress. She’s also found success with the drug that had the potential for — but didn’t result in — a life-threatening rash. Most important, there have been no more seizures.
Still, Janssen is hoping more can be done to shed the stigma that comes with an epilepsy diagnosis. Through joining the HBI epilepsy committee, and by sharing her story, she hopes to demonstrate to others that while managing the disease can be a challenging journey, an epilepsy diagnosis is not a life sentence of fragility and fear.
March is Epilepsy Awareness Month. If you would like to learn more about epilepsy, treatments and existing research, visit the HBI epilepsy page.
Brain and Mental Health research strategy
Led by the Hotchkiss Brain Institute, Brain and Mental Health is one of six strategic research themes guiding the university towards its Eyes High goals.
The Hotchkiss Brain Institute at the University of Calgary consists of more than 120 scientists and clinician-scientists who are dedicated to advancing brain and mental health research and education. The Institute’s research strengths, in the areas of Brain and Behaviour, Neural Injury and Repair, and Healthy Brain Aging, are leading to new treatments for neurological and psychiatric disorders, aimed at improving quality of life and patient care.