Help For Seizures -- For Years, This Mysterious Illness Was Treated As If It Were Epilepsy - Until Doctors Found Differently

Sometimes it is only a few seconds of blank space, of near semi-consciousness. Other times, an arm may jerk, spilling coffee or sending papers flying.

At its worst, Heather Bowers falls to the floor, bashing her head or bruising her body.

Bowers, 35, never remembers any of it. She never knows when the epileptic-like seizures are coming on or how bad they will be. And for 18 years, Bowers thought she did, indeed, suffer from epilepsy.

But Bowers and as many as one-fourth of the patients analyzed at Harborview Medical Center's Epilepsy Center show no trace of the erratic brain waves that set off epileptic seizures. They suffer instead from "psychogenic," or stress, seizures stemming from severe psychological trauma, usually during childhood.

"The seizures are as involuntary as hypertension or stomach ulcers," says Dr. David Clemmons, co-director of a new treatment program at Harborview's nationally known Epilepsy Center.

The program uses group therapy for the complicated disorder and is believed to be one of only two nationwide using such treatment. Diagnosed cases have increased nationally in recent years with the spread of epilepsy centers to most major medical institutions.

No one knows precisely how widespread the seizures are because little research has been done on them. But officials at Harborview and other epilepsy centers - which treat the most serious epilepsy cases - estimate 20 to 25 percent of their cases are stress-related.

That's about 50 psychogenic seizure patients a year at Harborview, including 10 who have been in group therapy since the program started in February.

The vast majority of patients are women who have suffered sexual abuse during childhood. Many have lived for years with a misdiagnosis of epilepsy, usually taking an array of medications with strong side effects.

Most, like Heather Bowers, have a long history of bewildering, frustrating experiences, misunderstood by family, friends and medical professionals.

First it was "spacing out"

Bowers' seizures began at age 12, not long after the end of the sexual abuse she said she silently endured for years. At first, there were relatively frequent periods of "spacing out" - inattentiveness lasting several seconds.

"Teachers would say, `Heather's not paying attention and needs to improve,' " said Bowers, who grew up in Woodburn, Ore., near Salem. "In the concentration department, I was really, really bad."

As she grew into her teens, the seizures got worse. An enthusiastic athlete, she occasionally fell while playing volleyball, softball or running track. She would awkwardly explain to teammates that she "just tripped."

"I didn't know what the heck was going on," said Bowers.

When she was 16, she fell and bashed her head in a hospital elevator after visiting her sister, who had just had a baby. It was the incident that finally impressed her enough to go to a doctor.

Bowers was given the usual battery of tests for epilepsy, including an electroencephalogram (EEG) to detect abnormal brain waves. Her EEG was normal. But doctors prescribed anti-epileptic drugs anyway because her symptoms were so strong and because some rare, true epilepsy cases do have normal EEGs.

Through her teens and young adulthood, the seizures continued, sometimes daily, sometimes only occasionally. Almost any kind of stress could set them off - the pressure of a busy day, an argument with a friend, memories of the past.

As with almost all such patients, doctors changed medications many times as the seizures trailed off, then returned with a vengeance. But nothing worked for long.

Bowers stopped participating in team sports in college. Then she fell several times while jogging and even during a ballroom dancing class. The medications made her dizzy, lethargic, sometimes confused. Finally, she dropped out of college. But all the while, she couldn't bear to talk about the seizures.

"People thought I was weird," she remembers. "It basically was not talked about in my family. . . . When they did it was something like, `Had any fits lately?' I didn't know where they were coming from."

Bowers worked through a number of jobs in Seattle group homes for the physically and developmentally disabled. But the stressful work as an aide, then skills instructor, then program manager triggered seizures and she often quit. She finally stopped working altogether in December 1993.

Another major stress for Bowers was her struggle with her sexuality. As a Mormon, a faith that disapproves of homosexuality, she was confused and wracked with guilt. Finally, when a relationship with a woman ended in early 1994, the stress set off frequent seizures, including two major episodes. Her physician admitted her to Harborview's Epilepsy Center for an extensive evaluation.

Clear diagnosis essential

The pattern is familiar to experts at Harborview and epilepsy centers across the country.

At Harborview, psychologists give the patient an extensive battery of psychological and ability tests, looking for the small differences that distinguish the condition from true epilepsy. Many non-epileptic patients, for example, do not have the amount of memory loss that epileptic patients have.

The key test, however, is seven days of 24-hour monitoring of the patient with an EEG and video camera. Dr. Mark Holmes, Harborview's director of clinical neurophysiology, and other epilepsy experts carefully analyze videotapes of each patient's seizures.

Patients with psychogenic seizures show none of the erratic brain waves of epilepsy (although a very small number have both types of seizures). Some seizures are also different from epileptic types: The patient may roll from side to side, for example, or recover alertness fairly quickly.

A clear diagnosis is the key to getting desperately needed help.

"We try to reframe the symptom (or seizure) from being a problem to being an illuminator" of problems to be dealt with, says Gretchen Gundrum, co-director of the Harborview group-therapy program.

Patients are told they don't have epilepsy, that their problem is psychological and that they can get better if they try. It is a jarring blow to all. They have been told the opposite for years and now they worry that others will think they have been faking it.

"I was blown away," says Heather Bowers. "It's like, `Now what do I do? How do I get rid of them?' . . . You don't have control, because you don't know what's setting them off. You have no clue."

A major and immediate benefit of the Harborview group-therapy program is patients' recognition that there are others with the same problem. Some of the sense of isolation is relieved immediately.

"You hold this thing on your shoulders for so long and now you can go somewhere and let down and be heard," says Bowers. "They listen to you and accept you as a human for what you're going through."

Listening to others helps bring out each patient's own intense feelings of anger, fear, shame and disenfranchisement stemming from physical, sexual and emotional abuse, usually from a parent or guardian.

The therapists explain that the seizures have become a way of dealing with those feelings and, through the years, with other stresses.

"We try to define the seizures as messages from the body and mind that there are issues that need to be dealt with," says Clemmons.

Patients are asked to keep a log of their seizures to put them in touch with their feelings. They are taught to search for the source of their stress. They're taught relaxation techniques, such as deep breathing and self-talk.

This does not happen easily. "For some, being self-reflective is a whole new experience," says Gundrum. About half have dropped out of the program before going to all of the 10 hour-and-a-half sessions. Those who drop out sometimes continue with individual therapy.

But most have been helped, Gundrum and Clemmons say. Their seizures are less frequent and milder. Some are back at work after years being dependent on others.

Heather Bowers takes time out now when life's stresses come down on her - when she's worried, in conflict with others, or even very tired. She writes down what's bothering her. She listens to Celtic and Native-American music. She plays her guitar.

Bowers believes she has put the abuse of her past behind her. She is living her life for herself now, not as others would have her live. She no longer works in group homes and is working to establish her own business as a genealogical researcher.

"I've come a long ways," she says with a warm smile. "I'm not the person I was a year ago. I feel really good."

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For more information on psychogenic seizures, call 731-2587.