Figure. No caption available.
The NFL's Samari Rolle has helped show the sports world that epilepsy is a manageable disease-not something to be shrouded in mystery.
Baltimore Ravens cornerback Samari Rolle missed five of his team's first 10 games during the 2007 National Football League season due to an undisclosed illness, a statement vague and foreboding enough to worry fans that Rolle's career-or even his life-might be in jeopardy. Rumors about the mysterious diagnosis became rampant until Rolle (pronounced like roll) decided to reveal the truth about his condition. On November 21, 2007, the 31-year-old announced he was suffering from epilepsy.
It got to the point where people were saying all kinds of stuff, and my family wasn't too keen on that, Rolle says. I didn't think epilepsy was anything to be embarrassed about, so I decided to just come out and tell.
According to the Epilepsy Foundation, approximately three million Americans-and 50 million people around the world-suffer from epilepsy, a neurological condition characterized by recurrent seizures. Epilepsy can affect any age group, but the condition is most common in children (many of whom simply outgrow their seizures) and the elderly. Although the term epilepsy (also called seizure disorder) may seem complicated, its definition is simple. Epilepsy is a disorder characterized by two or more seizures, says Orrin Devinsky, M.D., director of the New York University Epilepsy Center. That's it.
The seizures that characterize epilepsy are defined as a sudden change of behavior resulting from excessive electrical activity in the brain. Depending on where the electrical activity begins, they are classified either as partial seizures (beginning in only a part of the brain) or generalized seizures (beginning on both sides). Many people equate epilepsy with the convulsions depicted in movies and on television. However, most epileptic episodes don't involve someone shaking uncontrollably on the floor.
Seizures can manifest in a wide variety of ways, Dr. Devinsky says. They can go from very subtle symptoms like tingling in the hand or jerking on the side of the face, to subjective feelings like abdominal pain or déjà vu or fear, all the way to a lapse of awareness and responsiveness or even a convulsive seizure, where someone falls on the ground and has major motor-symptom problems.
Although Samari Rolle first began missing games because of his epilepsy during the 2007 season, he realizes in retrospect that he'd been suffering small seizures for the previous two years (including the one season he calls his worst ever as a professional). During that time Rolle was often lethargic or confused, regularly experiencing problems both mental and physical.
I'd get heat flashes or sweat profusely. Sometimes I'd go on an interview, and I could've sworn I'd been there before, done that before, Rolle says. Other times, I would get a funny scent, like a paint smell. But when I'd ask my wife, do you smell paint, she would say, no, I don't. I just didn't know what was going on.
While Rolle was told such symptoms might indicate he had epilepsy, the diagnosis was made conclusively in the fall of 2007. He awoke one Wednesday during football season to find his tongue bitten up and bloody. When he asked his family if he'd been hurt in the game the day before, Rolle's mother had to tell him that he'd last played on Sunday, three days prior. Shortly thereafter he woke up in the intensive care unit. Rolle's wife explained that he'd suffered two grand mal seizures, which are characterized by unconsciousness, convulsions, and muscle rigidity.
Gregory Bergey, M.D., Rolle's neurologist and the director of the Johns Hopkins Epilepsy Center, says that having undiagnosed mild seizures is not unusual. Samari's is not an infrequent presentation, Dr. Bergey says. It is very common that these complex partial seizures go either unidentified or undiagnosed until the patient has a grand mal seizure.
Figure. ON A ROLL Baltimore Ravens cornerback Samari Rolle scores against the Cincinnati Bengals. COURTESY OF THE BALTI MORE RAVENS
When Dr. Bergey first saw Rolle in October 2007, he quickly concluded Rolle was suffering from epilepsy. That diagnosis resulted not from any of the advanced medical technologies that are sometimes used to identify epilepsy, such as magnetic resonance imaging (MRI) or electroencephalograms (EEG). Instead, Dr. Bergey simply listened to the football player's story. Samari's MRI is normal, from a standpoint of anything that could cause seizures, Dr. Bergey says. He has a little bit of irregularity on his EEG, but nothing that dramatic. If you took a history from him, though, you could make the diagnosis from that history.
By 2007 Rolle had played nearly 15 years of big-time football (four years at Florida State and 10 years in the NFL). Could the sport have caused his epilepsy? According to Dr. Devinsky, it's certainly possible. Anything that injures the brain has the potential to cause seizures and epilepsy, he says. Anything from a head injury to a tumor, a stroke, an infection, a metabolic abnormality, any of those problems can cause epilepsy.
During his long career, Rolle says, he did suffer maybe two concussions. But no one is certain why his seizures began, and in fact most cases of epilepsy are idiopathic (of unknown cause). There is nothing in Samari's history that is a high-risk head injury, Dr. Bergey says. I wouldn't say football didn't cause [his epilepsy], but we can't say that football did cause it, either.
While doctors were unsure of the origin of his epilepsy, what they did know was that Rolle had suffered his first two grand mal seizures. In the fall of 2007, after a short stay in the hospital, he returned home hoping to get his life and football career back on track. Because epilepsy is an episodic disorder that directly affects people only during the period of time when the seizures are occurring (and the recovery period immediately afterward), Rolle hoped his epilepsy wouldn't slow him down too much.
At first, I really didn't know how serious it was. I thought you could have two seizures one day and then you'd be okay, Rolle says. But then it happened again, and it happened again…
Rolle feels lucky that his serious seizures have occurred at night, while he was sleeping. Still, his experiences with epilepsy have been both physically painful and emotionally draining. Because of his diagnosis, Rolle had to restrict himself from certain activities, including driving, being in a pool or hut tub by himself, and even having his own hotel room while on road trips with the Ravens (a privilege he earned as a veteran player). My wife didn't want me to have my own room in case I had a seizure, he says.
The emotional price has been just as high. There were several times when I've had seizures and just broke down crying, thinking, 'Man, why does this keep happening?' Rolle says. There's nothing worse than how your body feels after a seizure. The headache is unbearable. You're not coherent. And the tongue is the worst thing. A piece of my tongue is bitten off from the first seizure, and every morning I wake up and feel that tongue.
Nonetheless, Rolle refrains from griping about his case. I remember my doctor telling me that some patients have up to fifteen seizures a day, he says. I stopped complaining at that point.
Somebody with a well-controlled seizure disorder can go back to being a professional athlete. - GREGORY BERGEY, M.D.
Just as some fans and commentators wondered whether football precipitated the veteran cornerback's epilepsy, they have also questioned whether continuing to play the game will exacerbate his condition. Rolle himself worries about what long-term effect his chosen profession might have. Actually I've worried more about my family, Rolle says. You know, I love football, and I love being around the guys, but at one point, I was asking myself, is this really worth it? I was doing everything the doctors were telling me to do, but the seizures were still happening.
Ultimately Rolle decided to keep playing, largely because the medical community is in agreement that epilepsy sufferers whose seizures are controlled can return to their normal lives-even if that's the life of a hard-hitting pro athlete. Somebody with a well-controlled seizure disorder, or even a relatively well-controlled seizure disorder, can go back to being a high-school, college, or professional athlete, Dr. Bergey says. Obviously if they're uncontrolled, you wouldn't want to be a Formula 1 race car driver, but if you had occasional seizures, you could still probably play football or lacrosse or sports of that nature.
While Rolle did get back on the field for the Ravens during the 2007 season, it was not an easy process. Treatment options for epilepsy patients vary from case to case, but most doctors prescribe medications to mitigate the frequency and severity of epileptic episodes. (It might not be necessary to treat a child whose seizures manifest simply as a slight trembling or staring off into space.) While those drugs do not cure the disorder itself, they can help eliminate seizures. Unfortunately, the medications are a little bit more like Band-Aids than antibiotics, says Dr. Devinsky. They don't treat the scar tissue or other underlying problem that leads to seizures, but they seem to prevent sparks from turning into fires.
For Samari Rolle, it wasn't easy to find the right combination of medications that would allow him to return to his normal life of husband, father, and professional football player. That's when I started to miss games, Rolle recalls. I think I missed three weeks so they could figure out a medicine combination that would suit me. I'd be fine for two or three weeks, then I'd have another seizure. And I never went more than three months without having a seizure.
Rolle's treatment began with phenyoin sodium, a medication that was moderately effective but also had downsides. Dilantin gave him some side effects, Dr. Bergey says. He didn't feel as sharp as he used to, and you do not want anything that's going to affect his cognition, his performance, his reflexes, and his ability to respond. That was true for Samari the husband and father as much as for Samari the cornerback.
Dr. Bergey finally found the right combination in levetiracetam and lamotrigine, the two drugs Rolle now uses regularly and which have kept him from having a seizure since April 2008. Today Samari takes a daily regimen of those two drugs, Dr. Bergey says, explaining that with his continued use of medication and avoidance of certain triggers (excessive alcohol consumption, sleep deprivation, high fever, emotional stress, blinking lights) Rolle might be able to achieve total control of his disorder.
At times Rolle has been concerned about the long-term effect of taking so many drugs-he regularly has to have his blood and liver function checked-but he also realizes he has little other choice. I've been on so many different kinds of medications, Rolle says. But until you find the right combination, you're just going to keep having seizures.
I think Samari is going to need long-term therapy, and I think he appreciates that, Dr. Bergey says. But he's also a good example of someone who can achieve control over their seizures and go back to a very active, successful life.
While Rolle's condition was once shrouded in mystery, today he is an open book. Epilepsy is nothing to hide or be embarrassed about, he says. I never realized that some people are viewed differently and aren't allowed to do certain things because of it.
The fact that such a stigma exists has motivated Rolle to raise awareness about his disorder. His fellow NFL cornerback Geoffrey Pope of the Cinncinnati Bengals is a partner in the fight against ignorance. Pope, whose grandmother suffers from the disorder, participates in the National Epilepsy Foundation walk on the National Mall in Washington, D.C., each spring. He says that the public's ignorance about epilepsy is what he wants to eradicate.
I'm on a mission to educate as many people as I can about the disease, he says. Epilepsy can strike anyone. A lot of people get freaked out about that, but I'm trying to help show that epilepsy is not something to get panicked about.
For Samari Rolle, that has turned out to be true. With his seizures currently under control, Rolle will take the field for the Baltimore Ravens in 2009-his twelfth year in the NFL. As he does so, it is with the knowledge that he suffers not from a mysterious and frightening undisclosed illness but from something real, but manageable.