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diagnosed with epilepsy: managing treatments and support while being your own advocate
epilepsy is life-changing and there’s a lot to learn about the condition and how to manage it.
mar 11 2024
9 minute read
as the canadian epilepsy alliance reports, there are promising epilepsy treatments underway, including new forms of electronic stimulation of the brain.
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gary collins was in a high-pressure sales executive job in the tech sector when he was diagnosed with epilepsy in 1985. except for telling his wife and kids, the chronic condition was a secret he kept to himself for 25 years for fear of losing his job and his reputation with colleagues and clients.
“it was quite a hit at the time. i did not understand anything about epilepsy. it certainly affected and changed my life. i was afraid of the stigma, that people wouldn’t think of me as responsible or that i might be a liability,” says collins, who had his first seizure at age 20 at a friend’s house after lunch. his friend had stepped out for a bit and collins woke up on the floor and thought he had fainted.
at that time, a doctor advised him to slow down and take it easy, assuming he was working and playing “too hard.” he was diagnosed years later at mount sinai hospital in toronto after he fell during a seizure, struck his head and was taken to the er.
“really, i kept it under wraps,” he says. “i didn’t want anyone else to know, and i was lucky, knowing the numbers as i do today, that i was part of the fortunate 67 per cent whose seizures are mostly controlled through medication.”
in 2010, collins joined the board of epilepsy canada , a national charity dedicated to supporting research into new treatments and creating awareness of what epilepsy is all about. he was the first board member living with epilepsy. he’s now ceo of the organization and has widely shared his personal story and how hiding epilepsy takes an emotional toll.
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“i realized that it was important to tell my own story,” he says. “it’s been very positive, and it allows me to connect with our community and donors because when they find out that i have epilepsy, it changes the conversation because i’ve lived in their shoes.”
for people who are diagnosed with the disease, there are uncertainties all along the way. more than 300,000 – about one in every 100 – canadians have epilepsy, but it is still widely misunderstood.
epilepsy is a chronic neurological disorder where brain signals misfire, causing seizures that can look like convulsive jerking motion and cause unconsciousness, or prompt strange sensations, confusion or unexpected behavior. in fact, there are many different types of seizures.
as collins explains, convulsive seizures can be “a frightful event and witnessing it for most people is very frightening. most people don’t know what to do when someone has a seizure. so it’s scary. and then once someone has a seizure, they’re usually down for about 24 hours. it’s really hard on the body. usually you have to go sleep and then recover. even coming out of recovery, you’re hazy. you don’t remember what you were doing before it happened.”
here’s how you can manage an epilepsy diagnosis.
learn about epilepsy and support options
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epilepsy is life-changing and there’s a lot to learn about the condition and how to manage it. experts say knowledge and self-advocacy are important for ongoing learning and accessing care, and finding support through patient groups and their families can become a foundation to build on.
the canadian epilepsy alliance is a canada-wide network of grassroots organizations that offers support services, information and advocacy to promote independence and quality of life. the alliance’s website has a listing of the local agencies to reach out to for information and support , along with a 1-866-epilepsy number to call for assistance.
it also has a page of links to other resources , including options for a seizure diary to help people record, track and manage seizures, and a seizure tracker calendar to record and email to your doctor in advance of appointments.
epilepsy toronto , for example, has extensive programs for children and adults with its support groups, teaching tools and employment services. there are also shared stories from people with epilepsy to support and inspire others – because epilepsy can be so disruptive, it’s reassuring to understand you’re not alone.
as collins notes, about 33 per cent of people with epilepsy are drug resistant, so seizures are a challenge. “they may live a life of complete disorder. they can’t find a job. they can’t drive. their life is really impacted and they lose hope. as a result, a high number, about 90 per cent, live with depression. they lose hope that the condition can’t be controlled. they can have two seizures a day or 50 a month.”
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some people have seizure triggers like stress or quick-thinking, while for others, seizures seem to happen at random.
out of the drug resistant population, collins says about 2.5 per cent will die from sudden unexpected death in epilepsy, or sudep, which has no known cause. a high percentage of these deaths are for young adults between 17 and 27. “it’s devastating for families.
public education is one of the keys to breaking down stigmas about epilepsy. to further the cause, every march 26 is purple day, an international effort dedicated to increasing awareness about epilepsy. people around the world wear purple and host events, and you may have seen public monuments like the cn tower, bc place stadium and halifax city hall decorated with purple lights for march, which is epilepsy awareness month in canada .
build your epilepsy care team
connecting with an epilepsy group in your community will give you a local support and education hub. depending on where you live, you may have access to treatment and research clinics in canada, like the epilepsy program at vancouver general hospital , the krembil brain institute in toronto and the ottawa hospital . these centres are investigating seizure causes, where seizures start in individual brains, and advanced treatments.
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when it comes to your care team, you may be referred to an epileptologist, a neurologist who focuses on epilepsy treatment. these doctors excel in helping when seizures are difficult to diagnose or don’t respond to anti-seizure medication. in some cases, epilepsy surgery can be done when tests show that seizures start in a small, well-defined area of the brain and the procedure won’t disrupt functions such as movement, vision, speech or hearing. a surgeon can remove the brain area causing the seizures, notes the mayo clinic.
there are also minimally invasive approaches such as mri-guided stereotactic laser ablation when open surgery is considered too risky. the procedure, available in canada, uses a thermal laser probe directed at the area in the brain causing seizures in order to destroy the tissue.
your care team can also include epilepsy nurses who identify patient health needs and provide information about new diagnosis, managing seizure medication and the care plan going forward. they can be a great resource in partnering with community agencies to help address patient needs in the community like additional home care, social groups and transportation.
another important care member is the specially-trained electroencephalographic, or eeg, technologist who runs the testing equipment to locate electrical brain abnormalities.
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patients often benefit as well from sessions with neuropsychologists who focus on rehabilitation for people with neurological disorders like epilepsy that often affects self-esteem, mood and cognition.
be engaged in treatment and regular follow-ups
bottom line, you want your seizures to be controlled. “the more seizures you have, the more impact on your brain. so controlling seizures is really important,” says collins. for years, he was on a drug called dilantin to control his seizures. the generic name for the medication is phenytoin, also sold under the brands phenytoin sodium and tremytoine. but, like many drugs, it is hard on the body over time, he says, and has numerous side effects. he gained a lot of weight and had trouble with balance.
however, his neurologist only focused on the seizures. if they were controlled, he was told there was no need to change the medication. “he didn’t listen to my lifestyle changes. and after a while, i just felt like i was whining, so i decided to just suck it up.”
through his work at epilepsy canada, in 2018, he met a neurologist at the university health network’s toronto western hospital, site of the krembil brain institute and epilepsy monitoring unit. they had a conversation about his medication and side effects.
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“one was loss of balance. i had always been an athlete growing up. and then later on, i couldn’t even play golf because i’d fall over. i completely lost my balance. so i had stopped physical activity, i’d gained a lot of weight and had mood swings that were difficult to handle for myself and people around me.”
the neurologist suggested collins move under his care, which was a turning point in his life in many ways. he learned the tremors in his eyes, which affected his ability to concentrate and read and focus, could also be from the medication.
he asked me how i was able to work over the last five years because it was really stressful and hard, and i simply replied with, ‘i just gutted it out,’” collins says.
while each person responds to medication differently, the neurologist changed his medication to lamotrigine, also known as lamictal, and it was incredibly effective.
“within a month, it was like someone took a black hood off my head and i, and i could see again. so it was profound. and since then i’ve lost 35 pounds and back to a very active life and back into sports.”
collins stresses the importance of understanding the complications and side effects of drugs that are recommended, and going for regular follow-ups and reassessments with your specialist to discuss possible new medications.
according to the epilepsy foundation , some patients are able to stop seizure medication if they’ve been seizure-free for two to five years. the longer the time a person is seizure-free on medications, the better chance of coming off medicines. there’s hope for children, too, with more than 50 out of 100 children will outgrow their epilepsy. for adults, estimates suggest that 20 years after the diagnosis, 75 out of 100 people will have been seizure free for at least five years, although some may still need to take daily medication.
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be your own epilepsy advocate
“i think the most important thing is you have to be your own healthcare advocate,” says collins about speaking up and staying informed about new research and medications coming to market. he credits his change to a different neurologist and medication with reducing his stress levels, eliminating brain fog and the anxieties of feeling unhealthy. his renewed physical capabilities allowed him to walk the camino de santiago in 2019, a pilgrimage along a famous route in beautiful northern spain, to prove that he is “capable of most anything,” he says.
“we need to push our medical support teams to review our medical profiles from time to time and to review new methodologies.”
as the canadian epilepsy alliance reports , there are promising treatments underway, including new forms of electronic stimulation of the brain, implanted devices to deliver medication directly to areas of the brain where seizures begin, gene therapy, and transplants of immature brain cells to replace damaged or missing neurons.
and at epilepsy canada, collins and scientific advisors are funding research projects that may change the future of epilepsy care. for example, justin botterill, assistant professor of medicine at the university of saskatchewan is looking at temporal lobe epilepsy, or tle, the most common form of adult-onset epilepsy. he notes that one in three patients with tle don’t respond to current treatments, prompting the need to better understand seizure causes.
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approximately 80 per cent of seizures in tle originate in the hippocampus or nearby regions, so his research will evaluate excitatory projections from what’s called the supramammillary nucleus, or sum, of the hypothalamus that activate the dentate gyrus, or dg, subfield of the hippocampus. “recent studies have found that sum projections to the hippocampus strongly influence patterns of hippocampal activity to support essential functions such as learning, memory, and emotion. in addition, the sum has also been shown to strongly influence sleep and wakefulness,” he writes.
the main goal is to determine whether the sum to dg circuit is a major source of hippocampal hyperexcitability, seizures and sleep-related dysfunction in tle. the study will inform and promote the development of new therapies for these patients.
collins says the collaborative work of the epilepsy community is moving research forward, giving healthcare providers, patients and their families hope. in 2021, epilepsy canada partnered with cure epilepsy in chicago to strategically target financial resources to drive science and find a cure.
“we have great researchers in canada, there’s no question about that, and this is happening globally.”
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reach out to canadian epilepsy alliance and epilepsy canada for more information.
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