Epilepsy: 'It took doctors a long time to realize that I know my body quite well'

Although epilepsy is highly treatable with medication, 30 per cent of people with the disease, like 37-year-old Erin McDonald, rely on brain surgery to keep it in check.

Karen Hawthorne 8 minute read March 25, 2022
EEG with electrical activity of abnormal brain, electroencephalogram,EEG

For Erin Mcdonald, coping with epilepsy is about speaking up for herself, even though she knows she’ll never be seizure-free — or independent. GETTY

Some nights, Erin McDonald has a seizure in her sleep where she unknowingly gets out of bed and wanders around the house. She’ll often wake up with her pillow soaked from drooling or even in completely different clothes than what she wore to bed.

“Things happen when I’m still completely blacked out, but I have no idea what I’m doing,” she says.

Epilepsy, a neurological disorder of the brain causing recurrent seizures, poses an underlying threat to her daily life. The 37-year-old Hamilton woman can’t drive, and rarely takes public transit alone. She lives at home with her parents for her safety.

“For most people, when they think of a seizure, they think of somebody falling and convulsing,” she says. “I have those ones, too, but mostly when people see me have a seizure, it seems like I could be drunk, but I’m in a seizure.”

For McDonald, those seizures come in clusters of two or three a week, and can happen at any time of day or night, often taking 45 minutes for her to come out of and regain full awareness.

She’s lived with the unpredictability of epilepsy since she was six, diagnosed after she had a grand mal seizure at school and woke up in the hospital. Grand mal seizures — now more commonly called generalized tonic-clonic seizures — are caused by the abnormal electrical activity throughout the brain that signals the central nervous system.

Epilepsy is more than just one seizure

As many as one in 10 people will have a seizure in their lifetime, but most people who have a single seizure do not have epilepsy. Seizures can be a symptom of an acute condition, such as stroke or alcohol withdrawal, or people can have a seizure for no apparent reason and never have another one.

While seizures associated with epilepsy, usually begin in childhood, or after age 60, they can begin at any age. More than 260,000 Canadians have been diagnosed with epilepsy. It’s highly treatable, with about 70 per cent becoming free of seizures with medication alone. And for the 30 per cent with drug-resistant epilepsy, there are additional treatments including surgery, supervised diet therapy and nerve stimulation.

Some kids grow out of epilepsy as they develop, others aren’t as lucky. In fact, McDonald’s anti-seizure medication worked well when she was a child, keeping her seizure-free for a few years. She was even taken off of medication completely at age 10, but the seizures came back with the influx of puberty’s hormones. It’s been a complex course of treatment ever since.

In addition to taking anti-seizure drugs, McDonald has had several surgeries for testing purposes and intervention, including a lobectomy that removed part of the temporal lobe that causes seizures.

Several surgeries and a wedding

For the past two years, the severity of her seizures has improved slightly because of vagus nerve stimulation (VNS) therapy, where a VNS device was surgically implanted and connected to the left vagus nerve in her neck. The device sends regular electrical pulses through the nerve to help calm the irregular brain activity. She is also scheduled to start deep brain stimulation (DBS) therapy  in April. DBS, more widely used to help people with Parkinson’s disease and cerebral palsy, means another surgery, this one to implant electrodes in the brain that are stimulated to control nerve impulses.

Despite the challenges, McDonald has worked her way up the ranks at a local Wendy’s restaurant since high school and is now one of the managers. She’s also planning her wedding for November.

Dr. Mark Keezer, a Montreal neurologist and principal scientist at the CHUM Research Centre, specializes in convulsive disorders and has done extensive research on epilepsy treatments. Among his concerns for patients are the heightened cardiovascular risks for people who take anti-seizure drugs over the long-term, and access to lifesaving surgeries and other treatments.

“The work for me is about being willing to do the best we can to take care of our patients to avoid the consequences of chronic medication,” says Keezer. “I have lots of patients where one-third don’t do well, but two-thirds are doing well. I want to make sure they continue doing well and they don’t end up suffering from a heart attack at an early age.”

And while promising medications continue to be introduced, they only offer small, incremental improvements. “None of them has suddenly become the cure-all for everyone,” he says. “We’ve had to confront the problem that there are many people who will never respond to medication.”

Because of the complexity, epilepsy surgery is more of a last resort to stop or help reduce recurrent seizures — and tests, discussions and planning can take more than a year before a surgery is performed. The simpler cases are when imaging shows that patients have a lesion in the brain and tests confirm that the seizures are coming from that lesion, so that spot in the brain can be removed.

For cases in which the lesion in the brain isn’t visible, more sophisticated technology for imaging and testing has allowed for multidisciplinary medical teams to determine the location and plan surgery to remove it.

What’s critical in all of this is the story that patients and their families tell.

“How they describe their seizures is actually very important, and we use all of that to deduce where the seizures are probably coming from to then propose what part of the brain the surgeon’s going to try and take out,” says Keezer.

Canada slow to adopt therapies

While he commends the strength of the epilepsy community in Canada and the excellence of clinical centres across the country, including his hometown Montreal, as well as London, Ont. and Calgary, Keezer says we’ve been slow to adopt the neuromodulation therapies, like VNS and DBS, that so many would benefit from — mostly because of limited resources and hospital budgets.

But there’s also the conventional thought that “it’s always better to cut it out than to use VNS,” he says. Resection surgery is a curative approach that tries to stop the epilepsy, whereas neuromodulation is considered palliative to help manage the disease.

“Within epilepsy surgery, there are ways we could better ensure that everyone who should be considered for epilepsy surgery is offered that chance,” he says. “The further you are from a city, the less access for referral to an epilepsy centre.”

Keezer would also like to see optimal use of technologies like imaging and electroencephalogram (EEG) tests that look at the electrical activity of the brain to help predict whether someone is going to respond to medication or if someone actually has epilepsy — given the numbers of people who have one epileptic seizure, but never have a second.

A need for awareness

There’s a case to be made about the need for awareness of the disease, and also what it represents beyond the clinical care, says Cynthia Milburn, president of the Canadian Epilepsy Alliance.

The Alliance is the grassroots organization of epilepsy community agencies across the country that provide counselling and support for people living with epilepsy, along with their families and caregivers. Members will be hosting events while dressed in purple for the March 26 Purple Day, an international initiative to increase awareness and raise funds.

“The non-medical burden of epilepsy is just as important to talk about,” Milburn says, pointing to mental health challenges, disease management and unnecessary visits to the hospital ER when people panic about seizures.

“Epilepsy is very devastating. It’s very isolating. There’s a huge stigma,” she says. “They put you on meds that can make you tired and foggy…  it can be very difficult to carry on your normal life.”

Milburn’s son Harrison was diagnosed with epilepsy at 17 and experienced debilitating seizures throughout high school and university. He found a different neurologist in his final undergraduate year who decided he was a candidate for surgery on his right temporal lobe — he’s now seizure-free and practicing law in Ottawa.

“My family case is very positive and successful, but many are not, and of the one per cent of people that have epilepsy, about 30 to 40 per cent are not seizure-free,” says Milburn. “I have seen probably hundreds of seizures, and of course it’s terrifying for your own child, but every single time it upsets me.”

Part of the answer is education and understanding that if someone has a seizure, there are things you can do to help.

“Don’t be afraid, step up,” she says. “Protect their head, roll them on the side to keep their airway open so that they can spit up, don’t restrain them and let the seizure run its course. See if they have a medical alert [bracelet] and just don’t panic. When it’s over, they need to rest and they may not be fully conscious. That period is the brain recovering. There is no reason to call 9-1-1 in many cases.”

For Erin Mcdonald, coping with epilepsy is about speaking up for herself, even though she knows she’ll never be seizure-free — or independent.

“What has really helped me through everything is advocating for myself and speaking up if I knew something wasn’t right,” she says. “It took other people, including the doctors, quite a long time to learn that I do know my body extremely well. I feel like I can conquer anything.”

Karen Hawthorne is a Toronto-based writer. 

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