Uncontrollable seizures strike twice as many Americans as previously thought

Twenty-one years ago, Thomas Gazaway had the world on a string.

He was 33, happily married, the father of two young sons, and earning six figures as chief financial officer for a national software corporation.

It all unraveled in a split-second.

Running down a flight of stairs at his home in Atlanta, Gazaway lightheartedly decided to leap the final six steps. As he jumped, his head slammed into the sharp edge of a half-wall, knocking him unconscious.

Doctors quickly patched the wound on his head. But they've been helpless to do much about the resulting uncontrollable epilepsy that has robbed him of his career, his family and his freedom.

"What happened to me was totally unfair," says Gazaway, who now lives with his aging mother and fills his days helping her shop for groceries, tending their vegetable garden or watching TV.

Gazaway is among an estimated 2.3 million Americans -- and 40 million people worldwide -- who have epilepsy, the second-most common neurological disorder of the brain. While many of these people have a form of epilepsy that can be controlled, many others, like Gazaway, have a type that can't be treated effectively.

　　In fact, a recent study from the Epilepsy Foundation suggests that twice as many Americans as previously thought suffer from uncontrollable seizures.

The study, The Cost of Epilepsy, found that while 56 percent of those with epilepsy live seizure-free, 44 percent wrestle with attacks of varying severity. That amounts to roughly 1 million Americans.

For those with seizures that can't be controlled, the effects are devastating:

Although epilepsy is rarely fatal, a prolonged seizure can sometimes lead to brain damage and, occasionally, death.

People with uncontrolled attacks have higher rates of suicide, sudden unexplained death syndrome and accidental death -- especially drowning.

Some children with epilepsy struggle in school and are often misdiagnosed with learning problems, such as attention deficit disorder.

Twenty-five percent of people with uncontrolled epilepsy surveyed recently said they were unemployed, and 64 percent blamed their plight on their illness. Unlike diseases like arthritis or heart disease, epilepsy tends to strike people at a young age, limiting their earning power and productivity for a much longer period of time.
　　Many with epilepsy feel stigmatized by the disorder, a condition doctors call "The Scarlet E."

Patricia Osborne Shafer, the chairwoman-elect of the Epilepsy Foundation's Professional Advisory Board, says the 44 percent figure for uncontrolled seizures reflects what doctors are seeing clinically.

"It's important to know that this actually could be an underrepresentation because the study was conducted at only two sites, in Rochester, Minn., as well as in Texas," Shafer says. "While extensive analysis was done to try to compare it to the national population, you can't always be sure. It's highly likely that these are conservative estimates."

Despite advances, questions abound

Epilepsy is a chronic disorder that leaves a person prone to recurrent seizures, which are triggered by uncontrolled bursts of electrical activity in the brain. Normally, brain cells -- called neurons -- tend to fire about 80 times a second. But during a seizure, that can soar to a blistering 500 times a second.

While some people are born with epilepsy, most develop the disorder in childhood or later in life. And it's often called "The Hidden Disability" because most patients appear healthy between the seizures that are its hallmark.

Medicine has made great progress in recent years fighting epilepsy, including new medications, surgeries and even a special diet for children. Still, there's much about the disorder that remains a mystery. For instance, 75 percent of all cases have no known cause.

Even though doctors often can't pinpoint the cause, certain contributing factors have been identified.

Anything that damages the central nervous system, from a brain tumor to a serious head injury like Gazaway's, can cause epilepsy. In the young, birth trauma and genetic disorders are the most common causes. In the elderly, cerebrovascular trouble -- a stroke, for example -- is the most likely culprit.

Some rare forms of epilepsy are clearly hereditary. But research also suggests a child born to a parent with epilepsy may have a higher risk of developing one of the more common forms of the disorder.

Seizures can vary widely. They range from the relatively mild -- a brief, trance-like state that could be confused with daydreaming -- to the bizarre. Some can cause hallucinations or affect motor control, making the person laugh, run or even urinate uncontrollably. During severe seizures, a person can lose consciousness, collapse to the ground and convulse violently.

The frequency of seizures also varies from person to person. Some have them only every few weeks or months, while others endure hundreds a day.

Judith Dancer, a 42-year-old engineering manager in Oregon, remembers sitting in her doctor's office before she started taking an anti-epileptic drug that brought her seizures under control. Weeping, she told him, "You know what? If I had the choice of cutting off my arm or having this, I'd cut off my arm today."

Medications still the primary treatment

Thanks to the medical breakthroughs of the last few decades, many Americans with epilepsy can control their seizures.

The primary treatment remains medications, old and new. Most work by blocking the passage of certain chemicals into neurons, to try to prevent the frenzied brain-wave activity that signals a seizure.

Patients generally start by taking the medications in tablets or capsules of varying dosages. This allows doctors to determine the most effective dose for each person. Three medications in particular, Dilantin, Tegretol and Depakene, have formed the backbone of anticonvulsant therapy for the last 25 years.

But they're not perfect. All have been linked to increased risk of birth defects, and can produce side effects in some people that range from mental confusion to depression to tremors or even anemia.

"Many patients can do quite well with medical treatment. And many of the older drugs are still the first-line treatment," says Dr. Gregory Krauss, director of the Adult Epilepsy Clinic at Johns Hopkins Hospital in Baltimore. "But now, for patients who can't tolerate those, there's new options."

Doctors have found that combining smaller doses of an older drug with a newer drug is often more effective than a large dose of an older anticonvulsant. Also, combining older and newer drugs often seems to reduce seizures with fewer side effects than a single drug.

"One of the virtues of the new generation of medicines is that often patients can be controlled or better treated with fewer side effects," Krauss says.

Other treatments that work

For those who don't respond to medications, there are alternatives.

In cases where seizures are caused by a brain abnormality, surgery is an option. While not everyone is a candidate, doctors can perform a range of procedures, including microsurgery to remove a tumor or malformed lobe that could be causing the seizures. In some procedures, 60 percent to 80 percent of patients improve, says Dr. Michel Levesque, director of neurofunctional surgery at Cedars-Sinai Health System in Los Angeles.

For some children, a "ketogenic diet" has proven effective. Patients consume three or four times as much fat as carbohydrates and proteins combined, which forces the body to burn fat and produce chemicals called ketones. Exactly how or why this works still isn't clear.

Meanwhile, there's hope that continuing research, particularly involving genetics, will produce better drugs or gene therapies that could result in a cure.

"Genetics has the potential to lead to a real cure of epilepsy, in which not only would you be seizure-free, but perhaps you wouldn't even have to take anti-epileptic drugs," says Dr. William Theodore, chief of the Clinical Epilepsy Section at the National Institute of Neurological Disorders and Stroke.

Still, he cautions, "I think that will not happen for a long time."

Experts agree. They suspect that approaches like gene therapy are at least 50 years off.

"Cell-implantation therapies, stem cell therapy, direct gene therapy -- in 50 years, anything can happen," says Dr. Christopher Walsh, a neurologist at Beth Israel Deaconess Medical Center in Boston. "But the way medical progress is accelerating so rapidly, I have a tremendous amount of hope."

The stigma remains

Despite medicine's advances, life can still be hard -- even unbearable -- for people with epilepsy that's either difficult or impossible to control.

"Not only are you much more likely to be unemployed or have difficulty in school, you're more likely to be depressed or have problems with infertility," says Dr. Martha Morrell, director of the Columbia University Comprehensive Epilepsy Center in New York City.

"You also have to deal daily with the stigma associated with epilepsy," she adds.

That stigma is tough to shake.

The Cost of Epilepsy study states that people with partially controlled or uncontrolled seizures suffer financially. Men lose an estimated 34 percent of their lifetime earning potential and women lose 25 percent because they can't get or keep jobs.

"Epilepsy starts limiting them from doing routine jobs," says Johns Hopkins' Krauss. Out of desperation, he says, some patients try to hide their illness, often to prevent losing their driver's license.

Many must abandon careers they love.

Terese Kvasnicka had just started working as a third-grade teacher in 1986 in Ohio when her then-uncontrollable seizures forced her to quit.

"I was very blessed that I was married," says Kvasnicka, now a 37-year-old wife and mother of two who lives in suburban Minneapolis. Her husband's salary as a tax accountant made it possible to give up her job.

In April, she started taking a new drug called Keppra, which finally brought her seizures under control. She's now teaching part-time and is on her way to obtaining her full teacher's certification and her first driver's license in 13 years.

Milder cases still mean tough choices

Even those with milder forms of epilepsy face obstacles that people without the disorder never confront.

For example, those who finally get their seizures under control must wait -- sometimes up to a year -- to get their driver's license.

And in countless marriages where one or both partners have the disorder, couples struggle with the decision to have a child.

The Epilepsy Foundation's Shafer, who also works as an epilepsy nurse specialist at Boston's Beth Israel Deaconess Medical Center, knows this only too well. She and her husband agonized over whether to start a family because she has epilepsy.

"For years, I was told that I probably couldn't have children" because of hormonal problems associated with her epilepsy, Shafer says. She also had to consider how her medications and seizures might affect her unborn child. Anticonvulsants have been shown to double the risk of birth defects, particularly "neural tube defects" such as spina bifida, she says.

When Shafer finally accepted that, while it might be tough, motherhood was what she wanted, she had to consider another risk -- the chance her child might inherit the disorder. "I think that was probably the hardest struggle," she says.

Eventually, she decided that if it did happen, she was uniquely qualified to parent a child with epilepsy.

Today, Shafer is dedicated to raising her 8-year-old son, Tommy, who has experienced a few seizures so far but is otherwise healthy.

"He's doing quite well," she says. "A couple of years ago, we did start medications as he was entering into the public school system. We felt it would be in his best interest, safety-wise."

And while there's no way of knowing whether his seizures will disappear, or worsen, over time, Shafer says, "He's doing great now. He's playing sports and doing great in school."

(From HealthScout)