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Local epilepsy advocate seizing the month

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Mark Allison doesn’t stand out in a crowd, he looks like an ordinary middle-aged Flower Mound suburbanite you might see taking a walk on a sunny autumn afternoon, or pushing his 6-year-old grandson, Donovan, in a swing at the park.

Mark’s history, however, is anything but unremarkable.  In 1990, at age 30, he had his first epileptic seizure.

“I was at work when the aura started,” he said.

An epileptic “aura” is a simple partial seizure during which the conscious victim experiences what Mark called déjà vu, the feeling of having already experienced a current train of events.

“I actually had three auras in a row, and each one was more intense than the one before it.  I knew something was wrong, and I found a spot in the factory where I hid and waited for the episodes to pass, which they did,” he said.

An ordinary seizure doesn’t last more than a minute or two, and it is hard to picture Mark, who is outgoing and gregarious, trying to hide.

“Some time later I stepped into a jet to return home from a business trip when I noticed the aviation fuel fumes just before another aura began.  This aura left me wiped out.  By the time I got home I just dropped into bed exhausted.  The next thing I recalled was waking to see a pair of EMT’s obviously working on me from either side of my bed.  I knew then that I had epilepsy.”

That night Mark had experienced a tonic–clonic or grand mal seizure that caused him to lose consciousness and go into convulsions.

“I have to learn second-hand about what happened during a big seizure like that one,” he said, “because I have no awareness during the event.”

The cause of epilepsy, which is roughly comparable to unanticipated electrical power surges in the brain, is currently unknown.  Children generally tend to outgrow epilepsy.  The disorder does not appear to be inherited, and it is not contagious.  Head injuries, illnesses, and tumors may bring on epilepsy, which is not diagnosed unless a person experiences multiple seizures.

Daily oral medication(s) control most cases of epilepsy.  Tougher cases may be treated with brain surgeries to deal with physical abnormalities.

Mark tapped the area of his left temple, “They took out my short-term memory,” he said laughing, “Now what were we talking about?”

He also has a subcutaneous vagus nerve stimulator (VNS) in his chest, a pacemaker-like device he activates manually to lessen the intensity of an oncoming seizure.  The vagus nerve “wanders” from the brain’s stem down the neck into the rest of the body.

Mark pointed to the site of his vagus nerve, the jugular area on the left side of his neck, “The electric shock hurts when it goes off, but listen to my voice,” he said.  Like a kid with a cool toy, he tapped the VNS with a special black magnet on an elastic wrist band, and kept talking while his voice changed pitch.

Mark has tried an array of treatments to control his epilepsy without total success.  Several years ago he joined a clinical trial for a medication under development.

“It worked!” he said with a smile on his whole face, “I haven’t had a seizure in three or four years.”

He takes two other medications in conjunction with the new drug.

Mark fell prey to the temptation that feeling better often arouses: he tried to unilaterally reduce the dosage of one of his drugs.

“I hate to take drugs,” he said. He emphasized in the words hate and drugs. “It was a dumb idea.  I had a seizure within days.”

Epilepsy drugs must reach and remain at a certain level in the body to do their job.

“Adjusting an epilepsy medication requires supervised care,” Mark said with the wise nod and raised eyebrows of hindsight.

Neither epilepsy nor any of its current treatments come in a one-size-fits-all package.  Each case has its unique features, and so does each treatment.

Nobody in earlier generations on either side of Mark’s family had epilepsy, but Mark and 3 of his 4 siblings have been diagnosed with the disorder, “So I think there is a genetic component in our case,” he concluded.

“None of my children or grandchildren appears to have epilepsy,” he said with obvious relief in the sound of his voice.  He smiled and pointed up with his index finger, “My prayers are being heard.”

Epilepsy is the third most common neurological disorder in the U.S. after Alzheimer Disease and stroke.  According to the Epilepsy Foundation it affects well over 3 million Americans.  November is National Epilepsy Awareness Month, and the website www.epilepsyadvocate.com is chocked full of helpful information for anyone who wants to know more about epilepsy and its diagnosis and treatments.  Across the country local Epilepsy Advocates like Mark Allison are ready, willing and able to tell their stories to increase community awareness and knowledge of epilepsy.

 

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