what it feels like: 'i lost literally everything' to epilepsy
8 minute read
“if you have something that you want to do, go out and do it because you don’t know what’s going to happen tomorrow," jessica thomas says of living with epilepsy.
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jessica thomas had just started college. she was living with roommates on campus and enjoying the social life and first taste of independence. but one afternoon, she’d showered and decided to take a nap before she and her friends were going out for the evening. she set her alarm for 30 minutes but woke up before her alarm — and had no idea what was going on.
“i didn’t know where i was, even though it was my room. i didn’t know my name. i was just so confused. i didn’t know what i had done that day,” says thomas, now 26, of the unnerving events of december 2017 during her first semester at georgian college in barrie, ont.
“i went out of my bedroom to my roommates and i’m like, ‘where am i? what’s going on? what’s happening?’” her tongue was also bitten up and bleeding and she was completely bewildered. she somehow knew to call her mom and as they talked, she started to calm down and her memory slowly came back. her mom suggested going to the hospital, but thomas decided to go to bed and see how she felt in the morning.
it was one of her roommate’s friends who told her she probably had experienced a seizure.
similar seizure events during her sleep started happening more often, so she had to leave her college program in marketing and her job at the college restaurant to return home to uxbridge, ont. to stay with her parents. she felt overwhelmed by the sense of loss of control over her life.
“it was sad. it was awful, honestly, because i dropped out of school and had to move back home,” she says. her family doctor referred her to nearby markham stouffville hospital for an mri brain scan, so she was waiting for the scan for further investigation. her parents both work in healthcare. her mom is a nurse and her dad is a paramedic, which came in handy to help understand how to access care and live with a chronic condition.
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back at home, she had what she now assumed was a seizure in her night-time sleep. she woke her parents up and her dad stayed awake while she fell back asleep on the couch watching tv. in the morning, she was feeling a bit off and then it happened: she had a seizure in the day right in front of them at home, just a few hours after her night episode. “that was the first witnessed seizure that i’d had,” she says. “my dad took over and put me on my side, did all of that. and my mom got on the phone and called 9-1-1 because it was two seizures within about four hours. so they said, ‘hey, we should get this checked out.’”
at the hospital, the on-call neurologist diagnosed her with epilepsy and started her on anti-seizure medications. she stayed in hospital for a few days for monitoring. “it was just a few days before my 20th birthday, and i was thinking this is an awful way to start my 20s. then i lost my driver’s licence. i lost literally everything.” in ontario, like many regions across the country, your driver’s licence is suspended if you have a seizure disorder that may make it dangerous to drive.
thomas is definitely not alone. more than 300, 000 canadians – or about one in every 100 people – have epilepsy, a debilitating neurological disorder that is characterized by repeated seizures of various types and severity. seizures happen when abnormal electric signals from the brain change the way the body functions. this can bring on a loss of consciousness and rhythmic jerking movements, which is what people generally associate with seizures.
but these electric signals can also cause a temporary uncontrollable twitching of a body part or a sudden, brief change in feeling, or strange sensations and emotions with possible abnormal behaviour, according to the national charity epilepsy canada. why they happen is the subject of ongoing research. scientists do know that any event, like faulty wiring during brain development, brain inflammation, physical injury or infection can lead to seizure and epilepsy. according to recent estimates, though, in up to 50 per cent of patients diagnosed with epilepsy, the cause is unknown.
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while the disorder is highly treatable, experts say 30 per cent of patients are drug-resistant and unable to gain seizure freedom with medication.
jessica thomas took the opportunity to move to whistler, b.c. in the fall of 2020 to work in one of the resort hotels and do some snowboarding.
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what was it like to be diagnosed with epilepsy?
“it was an answer to what was going on. it was hard at first. i couldn’t drive, i had to move back home. that first year, i felt like i was like 15 years old again, getting my parents to drive me everywhere. they were scared to leave me alone. it was weird. but then i accepted it. i’m very much a cup-half-full person. i thought, ‘okay, what can i do?’ everything happens for a reason. and then along with that, there’s a lesson with everything.”
her introspective approach to her new life wouldn’t let her sit, mope and be miserable. that wasn’t an option. instead, she decided to figure out how to grow as a person, turning her epilepsy into something meaningful. she also enrolled in a college marketing program close to home so she could stay with her parents.
in terms of treatment, though, her body rejected every medication prescribed by the markham neurologist. so thomas was referred to the krembil brain institute in toronto, a research and treatment centre that also has the city’s only adult epilepsy monitoring unit. the unit is renowned for diagnosing the type of seizures a patient has and the area of the brain where they occur to help determine whether surgery is a treatment option. the krembil brain institute uses deep brain stimulation to deal with conditions such as parkinson’s disease and depression. people with epilepsy are at higher risk of depression because of brain regions affected the disorder, side effects of antiseizure drugs and the psychosocial impacts of seizures happening in public and stigma. at krembil, the research shows that deep brain stimulation could also be an effective way to reduce the number of epileptic seizures a patient might have.
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she spent two weeks in the epilepsy monitoring unit to investigate which part of her brain activated her seizures. “they take you off your medication, they have a camera in the room and they have an eeg strapped to your head to watch the brainwaves. the goal is to have seizures so they can see where they’re happening,” she explains. she only had two, but it was enough to capture some data on her particular case and she would hear back in a few months to see if she might be a candidate for other treatment or surgery.
staying positive and moving forward with epilepsy
instead of waiting around at home, thomas took the opportunity to move to whistler, b.c. that fall of 2020 to work in one of the resort hotels and do some snowboarding. “i thought, why not spend time outside. i loved it. now all my best friends are out there.” after the winter season, she moved back home because she got the call for the second round of more intensive monitoring at krembil.
she had stereoelectroencephalography, also called stereo-eeg or seeg, a minimally invasive procedure where 15 tiny holes were drilled in her head to insert electrodes directly into her brain to identify where the epileptic seizures start. she spent five weeks of her summer “plugged into a wall unit” at krembil where the team tried to induce her seizures through sleep deprivation and waking her up at odd hours. thomas didn’t have specific triggers for her seizures which made the process more challenging. and she had a lot of pain after the fibre-thin probes in her head were removed after the monitoring.
her evaluation was a complete turning point. her specialist called to say she was a candidate for brain surgery because they’d found the specific area in the right frontal lobe.
despite evidence that epilepsy surgery is highly effective for some patients, less than two per cent of patients who might benefit from surgery do so, according to health quality ontario. experts developed the canadian appropriateness of epilepsy surgery, or cases, online tool to help physicians identify patients who should be referred for an epilepsy surgery evaluation and can be used to help improve access to care.
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“i remember she said, ‘we can fix this. you’re a candidate.’ i was hemming and hawing about if i wanted to do it or not because i was thinking about everything that could go wrong. what if i can’t speak or can’t walk?” thomas recalls. she made the decision to go ahead. it was a five-hour surgery in february 2022, deep in the pandemic when she couldn’t have visitors in the hospital and remembers saying goodbye at the door to her parents. ‘i was like, ‘okay, i’ll see you guys later.’”
everything went well. her mom took a three-month leave from work to be with her during her recovery at home. thomas says the thing she fixated on most was her hair, worried she would be bald, but there was just a thin shave line required for the surgery.
in fact, she hasn’t had a seizure since. she’s down from nine pills a day for seizure control to three and has been able to get her driver’s licence back to drive again.
“my memory definitely is not what it used to be, which is okay. i have some cognitive problems with multi-tasking and focus, but nothing that i can’t work on and heal with time. but since the surgery, i have not had a seizure. that is amazing.”
with such great results, she planned a new adventure in australia to travel and work, and she flew out this february. “i want to go and travel up the east coast and just enjoy life. i want to jump out of a plane and go scuba diving.”
she hasn’t let her epilepsy hold her back – that’s the lesson she wants to share with others:
“you can’t let anything define you. i’ve learned that you don’t need to sweat the small stuff. people panic about the smallest things. it’s not that serious,” she laughs. “if you have something that you want to do, go out and do it because you don’t know what’s going to happen tomorrow. i went to bed one night thinking i had the rest of my life to just live normally and drive around in my car and go to school. then i was diagnosed with epilepsy. so you can’t wait for tomorrow or wait for the right opportunity. you have to act on it. “
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for more information and support services for epilepsy, visit the canadian epilepsy alliance and epilepsy canada.
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