Epilepsy 101: you can't swallow your tongue

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Kathryn Sykes remembers being 15 years old and having brief episodes where she couldn't remember things, speak, or understand what people were saying to her. They'd only last for about 30 seconds, maybe a minute, and she'd be fine right afterward. But they happened a lot, a couple times a day. Doctors in her hometown of Kitimat surmised she was hallucinating, or possibly depressed.

The disorienting “blips”, as she calls them, continued, but Sykes handled them in her own quiet way while being on the honour roll in high school. She moved to Vancouver to study English at UBC. There, when she was 18 and in the middle of exams, she had what's commonly known as a grand-mal seizure. Only then was she diagnosed with epilepsy.

“On one hand, I was relieved to finally know what was going on,” Sykes tells the Georgia Straight. “On the other, I was a bit angry that it had taken the system that long to help me.”

Sykes, who's now 27 and a social worker, has temporal-lobe epilepsy, just one of many types of the condition that affects one in 100 people. She explains the disease is subject to stereotyping: all too often people associate epilepsy with the scary image of a grand-mal, or tonic-clonic, seizure, which involves loss of consciousness and jerky movements that affect the whole body.

“There are more than 40 different types of seizures,” explains Sykes, who's also the community-development coordinator at the B.C. Epilepsy Society. “When people are first diagnosed, a lot of them are terrified: the only thing they think of are the grand-mal seizures, or they think they'll never be able to drive or have kids. Epilepsy is really on a scale: some people's seizures are completely controlled, and some people's aren't.”¦It's a very invisible condition in a lot of people; some have more pervasive seizures.”

Seizures are caused by abnormal bursts of electrical activity in the brain, according to the B.C. Epilepsy Society. The type of seizure depends on which part of the brain is affected, as well as how much. The way seizures play out varies from person to person. Their eyes might move from side to side, their face might twitch, their hand or foot might shake. People might simply have a blank stare or might wander around, completely unaware of what they're doing. Other people might experience full-body convulsions. Some have several different types of seizures.

Sykes takes prescription drugs for her seizures, which still occur every few months. She can't drive (though she's not bothered, saying the benefits include getting lots of exercise by walking all over Vancouver). She's married and hopes to have children. Many women with the condition have safe pregnancies, as long as they are in close contact with their doctors and consult with them about medications. Although some cases of epilepsy are debilitating, Sykes is living proof that the condition isn't necessarily so.

Another prevailing myth surrounding epilepsy—one that Sykes and the B.C. Epilepsy Society would like to smash, and fast—is that someone witnessing a grand-mal seizure should stick an object in the person's mouth to prevent her from swallowing her tongue.

“If you see someone on the street having a seizure, for goodness sake don't put a spoon in their mouth,” Sykes says, with feeling. “It's impossible to swallow your tongue. This is one of those myths that have really stuck around; we don't know why and we don't know where it came from.

“If someone's having a seizure, stay calm, stay with the person, try to roll them onto their side in recovery position—on their left side—move anything out of the way that they could hit, and let the seizure take its course. Don't try to restrain them. They're not conscious and they're not feeling any pain at the time.”

If you don't know the person having the seizure, or if it lasts longer than five minutes, call 911, Sykes says.

Once the seizure is over, be reassuring.

“People [witnessing a seizure] are going to stare or they might get too close; try to keep them back,” Sykes explains. “The person having the seizure might be scared or embarrassed.”

Sykes, who works out of B.C.'s Children's Hospital twice a week, says a sense of shame about the condition is especially common in teens.

“They're worried about their friends judging them,” Sykes says. “They're also worried that they're never going to have a boyfriend or a girlfriend or kids or a job. Teens are so self-conscious already; this just gives them one more thing to be self-conscious about.

“Control is a big issue,” she adds. “A seizure is unpredictable and involves a lack of control.”

Some people do get warning of an impending seizure. They might feel anxious, notice an odd smell or taste, or feel sick: such sensations are called auras.

There's no known cause in about 70 percent of cases, according to the B.C. Epilepsy Society, while others can stem from head injuries, a lack of oxygen during birth, stroke, brain tumours, genetics, and infections such as meningitis or encephalitis. Although epilepsy often starts in childhood, it can appear anytime in life. It's diagnosed through medical history and tests like electroencephalographs or magnetic-resonance-imaging scans. Most commonly treated with medication, epilepsy can also be treated with surgery. In some children, a ketogenic diet—which is low in carbohydrates and extremely high in fat—can help.

To help people better understand the disorder, the B.C. Epilepsy Society—which turns 50 next year—is hosting an ongoing lecture series. Sykes will take part in the next one, on January 20, at the Children's & Women's Health Centre of B.C. (4480 Oak Street). That evening's theme is “Ask the Expert”; joining Sykes are neurologist Kevin Farrell and nurse clinician Kelly McMillan. (More details on this event as well as sessions in March, May, and July, $10, are at www.bcepilepsy.com/.)

“Getting people talking about epilepsy is so important,” Sykes says. “People who don't have it are usually fascinated. And for those who do, it's helpful for them to know they're not alone.”

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