Seven years ago, Keri-Rose Tiessen was studying to become a nurse but was afraid her health could prevent that dream from ever coming true.
Ironically, a frightening medical episode not only led to her getting her condition under control but also opened the door to a specialized career in nursing where she could harness her experience and help others in her position.
Tiessen was diagnosed with epilepsy in 2006, but had only ever experienced minor “aura” seizures, characterized by panic, deja vu and other symptoms.
That changed in 2017 when, while working at a First Aid school, she experienced an aura then lost consciousness, collapsed, and fell head-first to the floor.
“I just knew something really bad had happened,” she said, adding she woke up in pain and confused.
She later learned her heart had stopped for between 30 and 45 seconds.
“I was basically dead, I was flatlined,” she said.
That episode led her to Vancouver General Hospital’s seizure investigation unit, where an integrated team of specialists was able to diagnose the incident as an “ictal asystole” — a seizure that stopped her heart from beating.
“This is rare, this is only one of about every 200 people admitted to a seizure investigation unit that have a seizure that leads to that kind of consequence for the person,” explained Chantelle Hrazdil, a neurologist and epileptologist at Vancouver General Hospital’s seizure investigation unit.
“We were able to implant a cardiac pacemaker such that if a seizure that leads to a slowing or stopping of the heart occurs, then the cardiac pacemaker kicks in, and then Keri-Rose doesn’t end up having an episode … and there has been no collapse or cessation of her heartbeat since we’ve had that pacemaker in.”
The intervention was life-changing. A follow-up determined Tiessen wasn’t a candidate for surgery, but the combination of the pacemaker and a change to her medication regime meant Tiessen could drive again, get back to her studies, and live a normal life.
“It saved my life, it gave me purpose. I wouldn’t be standing here today if it wasn’t for the seizure intervention unit,” she said.
Tiessen completed her studies and chose to specialize in neuroscience. She now works in the very same VGH unit that allowed her to take control of her health.
Hrazdil said the value Tiessen’s personal experience brings to the units is “immeasurable.”
That’s, in part, because the diagnosis process can be overwhelming for many patients, as epileptologists try to induce seizures in order to understand where they’re originating in the brain.
Patients are restricted to a bed, hooked up to sensors, and may undergo sleep deprivaiton or reduced medication.
“It’s a very stressful experience for a person to go through, and its an arduous emotionally and psychologically draining process,” Hrazdil said.
“Keri-Rose has a tremendous ability, as opposed to disability, to really relate to what people are going through when they are admitted to our unit, we admit people for an average of about five to 10 days at a time, sometimes longer.”
Tiesen said she’s able to connect with patients about her own experiences.
She’s also able to demystify the diagnosis process in the investigation unit.
“I get to see people who are just like me, other epileptics, and sometimes I talk to the patients and tell them my story if I find it will be helpful to them, we have long chats about how to get through your time here, because it can be long and boring, and we joke,” she said.
“One thing I always tell them is they have phenomenal army of people behind them here. It’s not just the epileptologists, the doctors it’s the EEG techs, the nurses” and more,” she added.
Tiessen said patients have shared heartbreaking stories of how epilepsy has affected their lives, from difficulty getting pregnant due to the medication they’re on, to not being able to drive or to hold their own baby out of concern they could have a seizure.
She said sharing her story is a way she can help break the stigma, while giving patients hope.
“You are kind of a prisoner with your diagnosis. You are given this laundry list of rules, you can’t do this, you can’t do that, and its horrifying,” she said.
“I want other epileptics to feel it’s OK to have this diagnosis, we can help.”