Learning to live with seizures

Complex brain reactions vary among patients, but they cope and persevere

By VICTOR GRETO / The News Journal

04/12/2005

Allysa Guaraldo looks tired.

Her brown eyes are half-closed. Her smile is wan. Even her voice, scratchy and deepening at regular intervals during a long conversation, sounds worn.

But she's not tired. Nor is she getting sick.

For the first time in her 27 years, she's found some control in her life.

The Warner Elementary third-grade schoolteacher has epilepsy, a condition centered in the brain that can cause a variety of types of seizures, some only lasting a few seconds and barely noticeable, others lasting minutes and stereotypically known for their symptoms of excessive shaking and frothing at the mouth.

Guaraldo, of Wilmington, sometimes feels lethargic from the medication she takes throughout the day to keep her seizures at bay. Her voice becomes more sultry than usual every five minutes, as a device, called a vagus nerve stimulator, surgically implanted in her upper chest seven years ago, sets off a charge in her brain to help prevent smaller seizures.

"When it goes off, it lowers my voice," she said. "People often ask me if I have a cold. I don't."

More than 9,000 people in Delaware cope with various forms of epilepsy. Their condition forces them to fight unfair stereotypes, and they must adjust their lives and habits toward controlling the conditions that may trigger a seizure. Many people suffering from epilepsy, and the doctors who treat them, will be attending the tri-state regional epilepsy conference Saturday in Philadelphia.

About 10 percent of Americans will experience a seizure at least once during their lives. It is not a mental illness. It is a nerve disorder that causes occasional involuntary muscle movements, and, at times, altered vision or unconsciousness.

Guaraldo's epilepsy is a major part of her life: daily medication and intermittent electrical charges, one long nap in the late afternoon and a good night's sleep, at least 10 hours. She avoids stress and eats right. She is no party girl. When she tried being one during college, her seizures increased. She now avoids driving in the center lane of I-95, just in case she has to pull over.

Epilepsy defines her life in many ways - even to the point of deciding whom she marries and whether she wants to have children - but she has accepted it, she said. She plans to wed a Philadelphia firefighter/paramedic in the fall. "He at least understands what's going on," she said.

Seizures occur when abnormal electrical activity in the brain - akin to a "short out," as one doctor describes it - causes an involuntary change in body movement, behavior, awareness or sensation. Because of the complexity of the brain, seizures can take many forms: They can be short or long; the person may be unconscious, or conscious and unable to respond; they may consist of barely noticeable blank outs, or sudden loss of muscle control, or falling and shaking and frothing at the mouth.

The causes of epilepsy are complex, said Dr. Michael Goodman, a pediatric neurologist at Alfred I. duPont Hospital for Children who cares for several patients with epilepsy.

"There may be an underlying predisposition in their genetic makeup in some people," he said.

But doctors don't know the specific reason for at least half the cases of epilepsy in children.

The disorder happens on a cellular level of the brain, he said, specifically in how the electrical impulses are conducted.

"So, it's difficult to figure out what makes it go," he said. "This is deeper than thinking. It's how the thinking starts, how the electrical activities are generated, propagated and spread around."

The National Epilepsy Foundation divides seizures into two major categories: generalized seizures and partial seizures.

They may be caused by trauma, infection, tumors, strokes, fever, brain malformations, genetic or chromosome disorders, drugs or other triggers.

Guaraldo has to live with coping with both major types of seizures. At age 2, she had her first "grand mal" or large seizure, which overtook her entire body, causing her to fall to the ground and shake uncontrollably. She had several more before age 5, when they suddenly stopped.

More than two-thirds of small children who show symptoms of epilepsy outgrow it.

But between the ages of 5 and 15, Guaraldo experienced a series of "petite mal" or small seizures, short hesitationlike blank outs, that went unnoticed. At 15, she had another major seizure while walking in Philadelphia International Airport after not getting much sleep. That's when a doctor diagnosed that she had been having the smaller seizures. Now, she takes several medications and adjusts her lifestyle to deal with both kinds of seizures.

There are several common triggers for epilepsy, including missing medication, lack of sleep, emotional stress and hormonal changes, Goodman said.

Guaraldo's last major seizure occurred a year ago, when she forgot to take her medicine. She occasionally gets short seizures when she doesn't sleep enough.

"It will always be a part of my life," she said.

Unnoticeable seizures

Emily Knearl's last seizure was in October due to a lack of sleep while caring for her newborn, Rachel.

Her "complex partial" seizures are characterized by powerful feelings of deja vu. Both her sight and hearing dims.

"The memory is so powerful, my entire brain almost is taken over with remembering that memory," she said.

But most people wouldn't realize she was going through a seizure, she said.

"It's not that I'm transported" to the time of the memory, said Knearl, 35, of Wilmington. "I'm always aware of what's going on around me. It's just I have trouble, if you asked me something, I'd be unable to answer it."

When she began having seizures at age 28, she would have up to six episodes in 24 hours. Then, over the next several years, they slowed in frequency to a handful a year. She and her doctor thought the seizures were merely symptoms of anxiety due to stress.

Although many who suffer from epilepsy do not know from what part of the brain it specifically comes, Knearl's epilepsy is caused by a quarter-size lesion on the left hippocampus part of her brain, an area that tends to affect memory and emotion.

She has to be careful about specific triggers, like stress, a bad diet and lack of sleep. "I'm lucky because I'm very clear that I have specific triggers," she said. "If I care for myself, the problem doesn't happen."

Because of the lesion's location, her seizures are prefaced by profound anxiety followed by powerful feelings of deja vu, she said.

Although she knows her seizures began at 28, she wasn't officially diagnosed with the condition until five years later. That only happened because she blanked out during a first date with the man she soon married. They were driving to Philadelphia when it happened.

Her future husband, Justin Wearne, made her see a doctor after he realized she had no memory of the seizure. It was then she was diagnosed, and the lesion was found.

She now takes medication twice a day. That, and avoiding sugars, caffeine and alcohol prevents the seizures, she said. "It's not a separate disorder from good eating and good life choices."

Link to child's growth

People who suffer from epilepsy have some elite company. Artists, leaders and writers, from Julius Caesar to Napoleon, from Vincent Van Gogh to Charles Dickens, from Leonardo DaVinci to Aristotle are thought to have had the condition.

When Ellen Serwik and her husband, Piotr, of Middletown, noticed their 6-month-old son, Peter, going into a blank stare and then his whole body shook, they wondered if something was wrong. At 8 months, Peter began to crawl, and, at times, fell over without explanation. They soon discovered the child was falling over from seizures.

Peter's seizures tended to happen in clusters. Finally, the Serwiks' pediatrician recommended seeing a neurologist. While visiting the neurologist, Peter experienced a seizure. The Serwiks discovered their son was having up to 25 seizures a day, even while he slept.

Peter was put on a drug called Topamax, which helped control the seizures, but the side effects stunted his growth and caused heat exhaustion. He hardly gained any weight in the next year. After the doctor took him off the drug and put him on two others with less harmful side effects, Peter grew 3 inches in six months. Although the seizures no longer occurred in clusters, each growth spurt was accompanied by one.

Peter, now 4 1/2 , is aware of his condition. Before a seizure, he will get a "funny feeling" in his stomach. Then, "I can feel myself shaking," Peter said. "But I'm not afraid of it."

The only time he becomes embarrassed is if he loses control of his bladder. Peter already has accepted his condition to the point where he did a show and tell at his day care, using a children's book about epilepsy and showing off his medical bracelet.

Like other boys, he is full of energy. But when he takes his two medications too close together, he grows lethargic.

Peter's last seizure, which took place while he was at day care, should have been expected, Ellen Serwik said.

"I had to buy him new shoes last week, and that's a clue," she said. "He grew a half-inch in a month." But, as Peter's growth naturally slows as he gets older, "we're hoping for better control as he ages."

The fact that tests and MRIs have found nothing wrong with her son's brain is both comforting and frustrating.

"You want your child to have a wonderful life," she said. "Even now, I worry if it will happen when he's swimming or on his bike or on a play structure. There is no warning, and that's the scary part."

Beyond the obstacle

Natalie DiSabatino, 16, of Newark, can relate to Peter's condition. In fact, Natalie has been diagnosed two different times in her life. During second grade, she was diagnosed, after experiencing dozens of undetected small seizures a day. Her mother, Angela DiSabatino, a nurse, suspected that her child had the condition.

A trip to a neurologist for a series of tests confirmed DiSabatino's suspicions. "During the 45-minute ride to the doctor's office, she read to me and blanked out 50 times," she said.

The six pills Natalie took made her feel sleepy, her mother said. But the medicine worked. She stopped having seizures. Three years after her diagnosis, she stopped taking medication with her doctor's knowledge.

Everything was fine, until last year, when Natalie turned 15 and wanted to get her driver's permit. Again, her mother suspected a problem. While shopping at the mall, Natalie told her mother her brain felt foggy and said some things that made no sense, Angela DiSabatino said.

Her doctor tested her again. Natalie was having more than 100 seizures a day. They consisted of 3- to 5-second blank outs.

"The teachers said they never noticed," Natalie said.

She now takes medication morning and night. She is allowed to drive as long as she stays on the medication. "Most people think I should be falling on the ground and shaking," she said. "But once I tell them how it is, they say it's not that bad. I drive all the time."

Last week, representing Delaware in Washington, she became one of 44 children nationwide attending the National Epilepsy Foundation's Kids Speak Up! - a program that brings together young people with epilepsy between ages 7 and 16 to petition congressional leaders for aid.

Natalie said she refuses to allow epilepsy to define who she is. "For now, it's fixed, or controlled."

Contact Victor Greto at 324-2832 or vgreto@delawareonline.com.