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Living with epilepsy

Every Manitoban living with epilepsy has their own story to tell. Here are three.

Photo of Chris Kullman
"I go to sleep at night
not knowing if I have
to go through it.
I want the seizures
to end."

Chris Kullman

Chris Kullman, 37, says he's unlucky, not because he has epilepsy, but because his seizures refuse to co-operate.

About a year ago, Kullman decided he wanted to know if he might be a candidate for epilepsy surgery, which can be successful in freeing epilepsy patients from seizures 60 to 85 per cent of the time.

But surgery cannot be undertaken until the "focus" of the electrical activity in the brain that causes seizures has been located and a determination has been made that surgery can be undertaken safely.

The first step in the long and exhaustive assessment process is to have an electroencephalogram (EEG), a brain scan that records the electrical activity that causes seizures.

But in three tries - the most recent lasting eight, 24-hour days, during which he was off medication - nothing has happened.

"I just have no luck," he says, speculating that it might be years before he has an answer.

Kullman likely has had seizures since birth, during which forceps damaged his skull, causing scarring on the right side of his brain.

But, like many infants and young children, his seizures were never identified as such, and instead were dismissed as a form of daydreaming.

The staring spells lasted into puberty, when growth and hormonal changes likely triggered his first serious seizure, alarming his parents and landing him in hospital and an eventual diagnosis.

Since then, the pattern of his seizures has repeatedly changed, including a three-year period during which he inexplicably was seizure-free.

For the past seven years, his seizures, usually at night, have occurred at fairly regular six-week intervals.

Kullman says the seizures are nothing compared to their dreadful, panicked aftermaths.

"When I come out, I'm in an extreme state of fight or flight. It's terrifying and horrific. I can handle the pain and discomfort, but not that.

"I go to sleep at night not knowing if I have to go through it. I want the seizures to end."

********

Photo of Mikaela Boulet
"I'm getting an A
or an A-plus
in everything."

Mikaela Boulet

When Mikaela Boulet was just a teenager when she had to make a tough choice - whether or not to have brain surgery. In fact, she had to make the decision twice.

The first time came when she was 16. Doctors had determined that a brain tumour was causing her to have epileptic seizures. Remove the tumour, and the seizures would go away.

Unfortunately, things turned out to be a little more complicated.

During the operation, it was discovered that her tumour was larger and deeper than expected. It was also located close to the hippocampus and temporal lobe, parts of the brain that control memory and speech.

"Since I was asleep during this surgery, they (members of the medical team) were unable to talk to me, which prevented them from knowing if they could remove the entire tumour and surrounding tissue," explains Boulet. "They had to stop, leaving a part of my tumour and a section of my brain where seizures were taking place."

Following the operation, Boulet would experience more than her fair share of fear and anxiety.

The complex partial seizures continued, typically lasting two to five minutes, leaving her confused and exhausted. Despite being a high achiever as a student, she quit school.

But by the time she turned 18, though, things started to turn around. Medical tests, including a three-week EEG examination at a clinic in London, Ont., established that the tumour could be removed.

This set the stage for Boulet's decision on whether to go forward with the second operation.

Like the first operation, the second one was intended to remove what remained of the tumour and portions of her hippocampus and temporal lobe. But, given the location and depth of the tumour, the operation also carried the increased risk of leaving the straight-A's student incapable of learning or talking.

She says she was told the surgery could rob her of her memory. "The best description was that I might end up like Dory," the little fish in the movie Finding Nemo who suffers from short-term memory loss.

But while in London, she witnessed a patient whose seizures were so extreme that he was a danger to himself.

"I felt terrible for him, but I also knew that anyone can have the same thing. It could be me."

Boulet chose hope, and decided to have the surgery.

Now 20-years-old, Boulet says she is seizure free, but continues to take medication, just in case.

She's completing her first year of university.

"I'm surprised," she says. "I'm getting an A or an A-plus in everything."

********

Photo of Tammy Humphreys
"I was tired of
taking medication."

Tammy Humphreys

The way Tammy Humphreys remembers it, one minute she was riding in the back of a military vehicle on a night training exercise at Shilo, and the next she was waking up in hospital with her skull bruised in three places.

She has no memory of what happened that night in 1994, but it wasn't difficult to conclude that she had been tossed around and hit her head repeatedly.

Twenty years ago, a bang on the head wasn't taken as seriously as it might be today, says Humphreys. And besides, she was a young reservist who wanted to "look tough."

She dismissed her injuries, returned to Winnipeg and resumed her studies at university.

About one month later, her sister was visiting and found Humphreys in the throes of a severe seizure. She had never had a seizure prior to the Shilo incident, but frequent, severe nighttime seizures and occasional daytime "absences" have been the norm ever since.

Humphreys refuses to let her seizures hold her back. She's married, has a family and, until recently, had a part-time job.

"I'm not embarrassed by it," she says. "I have seizures. So what? I don't let it stop me. You can't put yourself in bubble wrap."

But three years ago, she'd had enough and decided to look into the possibility of having epilepsy surgery to address her problem. "I was tired of taking medication," she says.

So, like many Manitobans before her, Humphreys had a preliminary assessment and is now awaiting word from the medcial team in London to learn what happens next.

"Yeah, it's hurry up, and wait," she says.

Back to "Brain storm"