One Woman's Struggle to Live in a World With Music

March 5, 2008— -- At first, Stacey Gayle thought she was losing her mind. Just the thought that music could cause a medical disaster seemed ridiculous … after all, five years ago, Gayle was a normal college student. But that was before.

"Before, life was great actually. I had a good job. I was going to church, I was going to school," Gayle said. "I had big dreams."

But then, her life was put on hold. One night while asleep, she passed out.

"All I remember is waking up in the hospital and … the nurse was standing over me and telling me that I had a seizure and I didn't even know what a seizure was at that time, so I was a little bit frightened."

After two years and many more seizures, she finally got a diagnosis: epilepsy. Like nearly three million other Americans, Gayle had an abnormal pattern of electrical activity in her brain.

Medication didn't help much, and worse yet, Gayle and her doctors had no idea what was triggering her intense seizures, or how rare a case she really was, until one day in the summer of 2006.

She was at a barbecue and remembers hearing a hot new hip-hop song called "Temperature," by Caribbean singer Sean Paul.

"My friend and I were just standing there — all I remember is the song came on. And I just remember like falling out and having a big seizure," Gayle said. "I realized that every time it came on, I was there having seizures. I could — as soon as the first beat came on, I'd just go into a seizure, I'm not certain why."

Was it possible that her seizures really be triggered by a song?

"I definitely thought I was crazy," she said.

One in 10 Million

It sounded strange, but Gayle's doctors at the Comprehensive Epilepsy Center had actually heard of such a thing.

As bizarre as it sounded, Gayle's suspicion was finally confirmed when doctors admitted her to the Long Island Jewish Medical Center for a series of tests.

After hooking her up to a brain imaging machine, they waited.

"She didn't have any seizures for three, four days … so we figured, oh boy, well, we'll have to just bring her back another day," said Dr. Ashesh Mehta, LIJ's director of epilepsy surgery at the center.

Gayle suggested that she come in with her iPod to "make" herself have seizures.

"She played it all night long," Dr. Mehta said. "And she had three seizures that night."

Her doctors suspected she was suffering from "musicogenic" epilepsy.

"I had heard of musicogenic epilepsy. I'd certainly read about it," said Dr. Mehta. "So I knew that this could happen. Of course, given how rare it is … the prevalence … was something like one in 10 million, by some estimates."

In fact, there have only been 100 cases documented, and Gayle is now one of them.

Seeking Solace From Music

It is known that epilepsy can be triggered by strong scents or flashing lights. When Prince Charles and Camilla appeared together for the first time, television stations were asked to slow down the footage because the intensity of flashbulbs could cause seizures.

But triggers have been known to take bizarre forms.

In the 1990s, a woman reported having seizures triggered by the voice of "Entertainment Tonight" host Mary Hart.

For Gayle, the mystery of her epileptic trigger was now resolved. But her situation became even more dire. Soon music of almost any kind was causing her seizures … sometimes up to 10 times a day.

"It's something really hard to live with," Gayle said. "I remember … coming down the stairs and someone outside was playing that music loud in a car and I remember falling down the stairs, and that's it."

Unable to walk down the street, go shopping, eat in a restaurant, ride the subway, drive a car or do anything where she might hear a song playing, 24-year-old Gayle had no choice: she quit school, her job, and stopped going to church and singing in her beloved choir.

Gayle was a prisoner in her own home. Even her TV became a danger.

"She could be watching like a movie and if it has music and she doesn't realize it's coming on, she would pass out," said Gayle's mom, Marhlan Nelson.

Unusual Treatment

Gayle began to become depressed, and considered suicide.

"Everything that I love was taken away," she said. "Everywhere there's music going on."

In the midst of the dark moments came a new danger. Doctors told Gayle that if they couldn't find a way to control her seizures, she could suddenly have a heart attack.

"When people have seizures over and over again, and you can't get them under control, there's a risk of, of dying from the epilepsy," Dr. Mehta said.

An unusual case of epilepsy, Dr. Mehta decided, required an unusual treatment: brain surgery. If they could take out the part of the brain where the seizures were originating, Gayle might be seizure-free.

"What we found is, there was a little island of activity, shown in light blue, where there was in fact a little more increased activity," said Dr. Mehta, pointing to an image of Gayle's brain. "And that leads us to think that that's where the focus was."

The doctors also found another area where they thought the seizures were coming from – that was the part they needed to remove.

It was a risky surgery. Stacey would only be the fourth known patient to undergo the operation. Doctors would remove about a half dollar sized chunk of Gayle's brain. Frightened, at first Gayle and her mom said they didn't want to do it. But after looking at her now empty life, both decided it was a risk she had to take.

Road to Recovery

Today, five months later, Gayle said she hasn't had any seizures. "Every day — every day living seizure-free is like another day, is a cure for me," she said.

For the first time in five years, Gayle could listen to music, without seizures. She was nervous the first time she played music to test and see if the surgery had worked.

"I decided that I really had to do it. So yes, I didn't have a seizure, so I was so happy.

Now Gayle feels good when she enters a story, lobby or an elevator and hears music.

"I go in the store and smile and they just be thinking I'm crazy," Gayle said. "It feels good to be back, back in school, back in church … you know, get my life back on track finally."

Click HERE to visit the Epilepsy Foundation Web site, and learn more about the disease.