Epilepsy Awareness Month

This is Epilepsy Awareness Month, and since some 2.7 million people in the United States have epilepsy, it is a good opportunity to iron out what is fact and what is myth when it comes to this disorder.

For example, contrary to popular belief, if someone is having a seizure, do not depress the person’s tongue, or restrain him or stop his movements.

Marianne Sailus, chaplain and patient advocate at the Allied Services John Heinz Institute, formed a support group in 1996 for those with epilepsy. Starting the group was a project close to her heart. Sailus had active epilepsy for 26 years, since being diagnosed at age 9. In 1994, she had brain surgery to help relieve the symptoms, and with the help of medication she has remained fairly seizure-free.

But she hasn’t forgotten what she went through before her surgery and sympathizes with those who have active epilepsy.

“There are so many myths out there,” Sailus said. At a former job, a colleague asked if he should stick an object in her mouth if she went into a seizure. No, Sailus answered.

“Well, wouldn’t Sailus swallow her tongue?” the man asked.

“Can you swallow your own tongue?” she countered. “Try it, right now.”

No, the man could not swallow his tongue.

“Well, neither can I,” Sailus said.

She said her life has changed since the surgery.

“People treat you different. People with epilepsy are sometimes looked at as different, strange,” Sailus said. “Now, I am looked at as just a normal person.”

One out of every 100 people has epilepsy, and one out of 10 will experience at least a single seizure in their lifetime. It is the third most common neurological disorder in the U.S., after Alzheimer’s disease and stroke.

The Epilepsy Foundation characterizes the disorder as a physical condition caused by sudden, brief changes in how the brain works, resulting in seizures. In more than 70 percent of cases, there is no apparent cause. The other 30 percent of epilepsy cases have a variety of causes, including head injuries, strokes, brain tumors, genetic conditions, lead poisoning, in-utero development problems, meningitis, encephalitis or severe cases of measles.

Plymouth resident Michael Loughlin, 25, became epileptic via encephalitis. Five years ago, he was studying civil engineering at Penn State University. As a credit requirement, he was getting hands-on work as manager of a road crew for PennDOT. One moment, he was standing on the road at his job, and the next he had collapsed on the ground in a seizure.

He was taken to the hospital, and eventually flown by helicopter to a Philadelphia hospital, where he was diagnosed with viral encephalitis and meningitis.

About three years ago, he had a Vagus Nerve Stimulation device implanted to help control seizures. Similar to a pacemaker, the implanted device sends a shock to the vagus nerve near Loughlin’s spinal cord, and the shock travels to the lower part of the brain. Every time Loughlin feels a seizure coming on, he rubs a magnet over his chest to bring him out of it.

Loughlin said that, like many people with epilepsy, he can sense a seizure coming on. Those who suffer from migraines may find familiarity in Loughlin’s description: “It’s so hard to explain. You get an aura, you lose your hearing, or may have déjÀ vu, you blank out, or have a feeling in your head that you know you’re going to get one.”

Back at school now, Loughlin is studying elementary education. He had gone through a great deal of rehabilitation after his illness, and now has to take it fairly easy. Things like lack of sleep, a cold and overworking can bring on seizures – and he’s had a couple of bad falls.

In the heat of summer last year, he was playing basketball and hit the pavement hard during a seizure, injuring his shoulder. He has fallen down stairs and through a glass coffee table.
“Thank God, I don’t feel a thing when I have a seizure,” Loughlin chuckles. When he regains consciousness, however, he feels the results of his seizure, like his shoulder injury on the basketball court.

He cannot go swimming alone, for fear he might suffer a seizure in the water. And by law, he cannot drive until he is six months free of seizures. While this is cramping Loughlin’s style, he said his family and friends have been great about giving him rides. His green 1995 Jeep Wrangler sits in the driveway waiting for his attention.

“I’m hoping it won’t be too long before I can drive again,” Loughlin said. “The Jeep is all ready to go.”

Clear the area around the person of anything hard or sharp.

Loosen ties or anything around the person’s neck that could make breathing difficult.

Put something flat and soft, like a folded jacket, under the person’s head.

If possible, turn him gently on his side, to help keep the airway clear.

Stay with the person until the seizure ends naturally.

Be friendly and reassuring as consciousness returns. Keep calm.