Epilepsy drugs are known for serious side effects, including lethargy, hyperactivity, weight gain, weight loss, dizziness, anemia, osteoporosis—and mental disturbances that may confoundingly mimic the symptoms of epilepsy themselves. Devinsky is continually balancing the unpleasantness of a seizure against the misery of throwing up. "You might have two staring spells a month lasting a couple of minutes, and you're on a high dose of medication," Devinsky says. "Now, I can put you on a second medication and get you down to one a month. So now you've got two extra minutes a month but in exchange it's affecting your quality of life for the 15 hours a day you're awake: it may make you tired, or dizzy, or cause mood changes or memory problems. So do you want to make that trade-off?"
Four days a week, Devinsky, who is 52, with a lean, athletic build and a brisk but friendly demeanor, takes a train from his home in New Jersey—he is married, with two teenage daughters and a dog, whom his patients faithfully inquire about—and arrives in New York by 6 a.m. He works out in the gym for an hour before starting his hospital rounds, and then heads to his office. On Thursdays, he sees patients at St. Barnabas Hospital in Livingston, N.J., where he runs another epilepsy center. In a tie and plaid sports jacket, he strides the narrow halls of his clinic, popping in and out of exam rooms where patients wait in varying degrees of anxiety. Even his adult patients usually come with a parent, or a spouse or sibling; almost no one comes alone.
Over the years Devinsky has found himself becoming deeply involved in the lives of his patients. He is close enough with Dan Wheeless to have been a guest at his wedding in 2006. Devinsky says he's been influenced in this way by Sacks, a close friend, who has an exceptional gift for entering into and describing the mental lives of his patients. "I do let patients into my life, and I let myself get into their lives," Devinsky says. "It's an important part of who I am as a doctor." He knows that Wheeless is discouraged because his seizures—which had disappeared entirely for years at a time—have resumed and are becoming more frequent, twice already since New Year's. Worse, they are happening with no obvious triggers under his control, such as drinking or missing a pill. Although Devinsky has patients from as far away as Italy lined up to see him, during a recent office visit he chats with Wheeless as if he had the whole morning for him. He increases the dosage of his antidepressant, suggests melatonin to help him sleep and schedules him for a home EEG—a brain-wave monitor that can be worn for a day while the patient goes about his routine. Wheeless smiles a wan smile, picks up his helmet—for bicycling, not to protect his head in a seizure—and heads out the door. Later, a reporter asks him how he feels about his seizures starting up again. "It's kind of heartbreaking," he says wearily. "I would love to not have epilepsy."
On the day he sees Wheeless, he also sees a college student who has had more than 100 seizures, the most recent one last fall. It happened, she says, after taking Benadryl, an over-the-counter allergy drug that can promote seizures in susceptible patients.
Devinsky nods sympathetically. "How many?" he asks.
"Fifteen," she mumbles. "It's like Robi-tripping."
Devinsky sighs. "I hate to give you the drugs-and-alcohol lecture in front of your parents."
