Myths and Epilepsy

There are a number of thoughts, ideas and perceptions about the neurological disorder epilepsy, many of them untrue.

It's not true that epilepsy only starts in children, or that it's synonymous with mental illness. It's not contagious. And, despite popular myth, people having the seizures typically associated with epilepsy often aren't in danger of biting their tongues.

So why do so many people know so little about a disorder more than 2.7 million Americans are living with?"It's partly out of fear," said Linda Wallace, executive director of the Connecticut chapter of the Epilepsy Foundation, a national organization committed to epilepsy research, education and advocacy.

This is Epilepsy Month, and the foundation and other organizations

are looking to change these perceptions through public awareness campaigns. For instance, the foundation recently launched "Out of the Shadows," a campaign to increase epilepsy awareness, raise research funds, and end discrimination against people with epilepsy. People can learn about epilepsy through the campaign's Web site, www.outoftheshadows.com, and its hotline, (1-888-886-EPILepsy). Though there's been some progress in educating people about epilepsy, there are still many misconceptions about it, Wallace said. One fact few people know is how prevalent it is. About 181,000 people develop epilepsy and seizures each year. In Connecticut, there are between 45,000 and 50,000 people living with the disorder.

"One of the myths is that it's very uncommon," Wallace said. "Actually, it affects more people than cerebral palsy, multiple sclerosis and Parkinson's disease combined."

Epilepsy is usually diagnosed using a bran scan or an electroencephalogram (EEG), which electrically records brain activity. Though commonly associated with children, it can occur at any age.

There's no one cause for epilepsy, doctors said. It can be caused by a genetic vulnerability to the condition, or it can be the result of an event, such as a stroke, an accident, a tumor or an infection. Essentially, the result is that clusters of neurons in the brain signal abnormally, leading to the seizures that characterize the condition.There's a lot of confusion about epileptic seizures. Many people believe epilepsy and seizures are the same thing, said Dr. Srinath Kadimi, neurologist at St. Vincent's Medical Center in Bridgeport.

Though seizures are a defining trait of epilepsy, Kadimi said, not all people who have seizures have epilepsy. Many people have seizures caused by other conditions, including low blood sugar."Sometimes we use the words 'seizure' and 'epilepsy' interchangeably," Kadimi said. "But that's not necessarily true."

Also, most people have a set idea of what an epileptic seizure looks like — sudden stiffness, shaking, confusion afterward. But there are many different types of seizures, said Dr. Kanaga Sena, Bridgeport Hospital's chief of neurology services.

The varieties range from the "standard" seizure many associate with epilepsy to a facial motor seizure or a seizure, common in children, in which an individual momentarily loses awareness. Many people still believe bystanders should force a spoon or other object into the mouth of a person having a seizure, hoping that will keep him or her from biting his or her tongue. However, experts said most people having seizures aren't in danger of biting their tongues, and forcing something into a seizing person's mouth can actually hurt him or her.

In addition to such damaging misconceptions, the stigma attached to the epilepsy can prevent some people from even admitting they have it, Kadimi said. "People are embarrassed to come out with their diagnosis," he said.

Epilepsy also can be disruptive to a person's daily routine and quality of life, Wallace said. "Say that a person is working, driving, involved with a family, and they're diagnosed with epilepsy," she said. "There's a good chance they'll lose their license until the seizures are under control." In a worst-case scenario, if the person doesn't get the license back, he or she could lose employment, which would lead to losing money and not being able to provide for a family. "It can be a downward spiral," Wallace said.

Thankfully, many with the condition can control epilepsy with medication or surgical techniques. The latter include the vagus nerve stimulator, approved by the Food and Drug Administration in 1997 for those who have trouble controlling seizures with medication.

Sena likened the vagus nerve stimulator to the pacemakers used in those with heart conditions. A wire is attached to a nerve, the vagus nerve, and is used to send mild electrical pulses to the brain. The pulses help control the seizures.

Generally, Sena said, epilepsy can be controlled with medications and some minor lifestyle changes, such as getting enough sleep and not abusing alcohol."Many of these people can have a normal, productive life," he said.