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Musicophobia: When Your Favorite Song Gives You Seizures

The story of a Queens, N.Y., woman reveals a rare kind of epilepsy
music epilepsy seizures



© ISTOCKPHOTO/AMANDA ROHDE

Stacey Gayle used to love music. Listening to it and performing it was a big part of her life. She had stacks of CDs in her car, went to concerts of artists like Sean Paul, and would go to parties where hot songs would blare. She was also an active member of the choir at her church: Solid Rock Church of the Nazarene.

Then she started having seizures.

The first one happened while she slept in her bedroom in Rosedale, Queens in New York City on the night of March 3, 2005. She had just turned 22. Her mother rushed her to the emergency room, where doctors stabilized her. Several brain scans and blood tests gave no clue as to why she seized.

Soon after, she had another, this time at a friend's barbecue. She blacked out, fell down and started to shake like crazy as her brain cells went out of whack, firing electrical signals without pause.

At first, the seizures seemed to occur randomly. In the spring of 2006, however, she noticed a pattern. At the time, Sean Paul's "Temperature" was sitting at the top of the Billboard Hot 100 singles chart, continually being played on urban radio stations. It was playing at nearly every barbecue and party she went to. That was a problem: "Every time it would go on, I would pass out and go into a seizure," she recalls.

All it seemed to take was a few seconds of the song to send Gayle to the floor. "That's the last thing you would think," she explains, "but I did it at home one time and it happened again."

To Gayle, it was clear that the music was causing her seizures. Afraid no one would believe her, she didn't tell a soul except for a lone confidant. Her neurologist, Alan Ettinger at the Long Island Jewish Medical Center (LIJ) in New Hyde Park, N.Y., was in the dark as he put her through a gauntlet of prescriptions. She would eventually try out six antiseizure drugs. The medications offered little relief.

"When you look at individuals who have seizures and whose seizures have not responded to a good trial of two antiseizure medications, the chances of becoming seizure-free from another medication, or another after that, is very slim," says Ettinger.

To try to figure out how to treat Gayle, Ettinger and a colleague admitted her to an epilepsy monitoring unit in early 2007. The idea was to let her have a seizure. For four days, she wore a cap studded with electrodes so that doctors could observe her brain waves and videotape her.

They took her off her medications. No seizure came.

The doctors then tried keeping her awake. Nothing.

Gayle was tired of waiting; she had plans to fly to Jamaica the next day. So she told them to hand over her iPod. She put "Temperature" on repeat and drifted off to sleep.

She seized three times that night.

"The doctors were flabbergasted; they were speechless," says Gayle. "They couldn’t believe what I was saying was actually true."

The next day, Stacey went to JFK Airport on her way to the Caribbean. But as she approached her gate, she overheard Sean Paul blaring from an airport bar.

She never made it onto her flight.

Soon, the reaction spread. Throughout the next year other popular hip-hop and R&B songs like Rihanna's repetitively infectious "Umbrella" and crooner Sean Kingston's earnest "Beautiful Girl" sent Gayle to the floor. She was also responding to alternative music and the sound of the drums that accompanied her church choir's performances. Suddenly it seemed like the only types of music that weren't causing her to have a seizure were jazz and classical—both of which she didn't particular like.

Gayle was forced to drop out of school that fall because of her illness. Personalized ring tones drove her nuts. "When people's phones were going off in class, I was having a lot of seizures at school," she says. "Life just turns upside down when you take music out of it: I remember sitting outside of stores in the mall and crying because I can't even go shopping or sit in a restaurant and eat."

She briefly took a job, working at a Bank of America in Manhattan. But, she couldn't handle the noises on the subway, and she would seize frequently both on her commute and at the office.

With medication having been an unequivocal failure, her doctors were wondering if they could do anything other than keep music away from her—an unlikely proposition.



Macdonald Critchley first described musicogenic epilepsy—the technical term for seizures caused by music—in a 1937 paper, according to celebrated neurologist Oliver Sacks's latest book Musicophilia: Tales of Music and the Brain. Ashesh Mehta, a neurosurgeon at LIJ Epilepsy Center, calls the condition "exceedingly rare," noting that there are only 150 case studies ever reported, including the 11 Critchley wrote about. Patients have been known to react to everything from classical music to the Beatles and Pink Floyd to church bells played over a radio.

"All the case reports talk about them being triggered by specific songs or specific tunes and specific singers," says Dan Friedman, a neuroscientist at the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research (NKI)—in Orangeburg, N.Y. "But it’s not the specific tune," he says, "but the emotional reaction to it."

Scientists have no idea what causes epilepsy, which plagues roughly 2.5 million Americans. Normally, although it appears quite controlled, the electrical activity in the brain is quite chaotic, says Mehta. And while seizures would seem to be a loss of control, they're actually the result of much of this activity falling into step, like soldiers in a marching army. "If they are all marching in time across a bridge," he says, "the bridge would start to move." Just as the bridge can become unstable when under that amount of stress, the brain becomes unstable when activity patterns sync up.

Catherine Schevon, a neurologist at the New York–Presbyterian Hospital/Columbia University Medical Center in New York City, says that some epilepsies happen after a network of brain cells that wires together to perform a specific task goes haywire. In the case of musicogenic epilepsy, it seems to affect the cells involved in enjoying music.

Charles Schroeder, a neuroscientist at the NKI, says responding to a song emotionally could cause such groups of cells to become extremely excited—and cause a seizure. Music—perhaps its rhythms—generates a pattern of rhythmic activity in the brain. If that rhythm is similar to a negative pattern that your brain has a tendency toward, the seizures would become associated with particular types of music.

When medications prove ineffective, the only option for relief from the seizures is surgery, which leaves surgeons faced with a difficult choice: "They don't want to take out any more brain than they have to, but they have to take out enough," Schroeder says. "Hopefully, a patient's emotional response to music will be largely unchanged."

For example, if the surgery involves a region of the brain known as the hippocampus, which is involved in memory, patients might have mild memory loss. "Most people would say that's a pretty good trade-off," Schevon adds.

 


As drug after drug failed, Ettinger's mind turned to surgery. He had referred Gayle to his colleague Mehta, who first saw her in the fall of 2006, before her stay in the epilepsy monitoring unit. By the time they figured out what was causing Gayle's seizures, Mehta had to confront Gayle with some bad news: The only way to stop the seizures was to remove all of the brain cells that acted up during her episodes.

Gayle panicked. They were literally going to scoop out part of her brain. "When you hear brain surgery, you figure you're going to come out handicapped," recalls Gayle, who thought the procedure might leave her mentally retarded. "I told Dr. Mehta, 'I am not going to do it.'"

She returned to her native Canada in the summer of 2007—that's when the music on the stoops of Queens is the loudest, she says—to weigh her options. She considered just continuing to live with the seizures. But, for months she'd been homebound, trying to live music-free, a lifestyle that caused her to become depressed. "I was just fed up," she says. "I'm living this life and it's not the way I want to live."

She called Mehta and told him she'd have the surgery—which only four people with musicogenic epilepsy had ever had before.

 


Weeks after her first turn in the seizure monitoring unit, the doctors brought her back to find out where her seizures might be starting. They wanted to scan her brain while she convulsed. She put on "Temperature." Within five seconds, she recalls, she had a great big seizure.

Mehta and his team found the overexcited brain cells in the lower section of the brain behind her right ear—perhaps not surprising, because that's the part of the brain that figures out what to do with sounds. The hyperactive cells were also in areas of the brain involved in emotions and memories of particular experiences.

Because of where the cells causing the seizures were, Mehta needed to make sure that cutting them out wouldn't leave Gayle unable to understand conversations, speak or remember key events. He sent her to a neuropsychologist, who put various parts of her brain to sleep and then gave her a battery of speech and memory tests. The areas that would be left after the surgery could compensate for those Mehta would be cutting out.

In late September Gayle went under the knife for the first of two operations. During the procedure, Mehta and his team put hundreds of electrodes deep into the areas of her brain involved in her seizures. They took her back to the epilepsy monitoring unit so he could map specific parts of her brain and make the most precise cuts possible. She stayed there for four or five days without her medications and without any abnormal brain activity. The scientists finally gave her back her iPod, and as she slept she had a seizure. While she convulsed, the electrodes picked up the activity of specific cells in her brain.

She was ready for the second operation. In early October Mehta removed a small egg's worth of her brain—almost 2.5 inches ( six centimeters) long.

Since then, Gayle has been seizure-free. Mehta says she's had no mental side effects from the surgery. She has returned to her church choir. In January she enrolled at York College/C.U.N.Y. in Queens, where she is studying to be a math teacher and no longer fears the ring of a classmate's cell phone. And she is free to listen to whatever she chooses—even Sean Paul.

"Trust me," she says, "music is everywhere—I never realized that until I started getting seizures."

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