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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."

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Member Comments

  • Posted By: donnabarajas @ 10/30/2009 2:31:41 AM

    Donna Barajas http://www.cbs.com/primetime/60_minutes/video/?pid=GQIzNJWFeZA3_UdBSl8JcB58XdIud78c

    This episode has some interesting info on a new procedure for people with siezures. My son has had seizures for over 20 yrs and part of his frontal lobe removed. He went 6 wonderful yrs without any siezures, until a year ago. They are back... This gives me hope again!

  • Posted By: donnabarajas @ 10/30/2009 2:30:35 AM

    my son was diagnosed at 5 yrs of age with siezures, he is now 31. He had apart of the right frontal lobe removed. He went 6 yrs without siezures and now has had them again for over a yr. They are the same, only thing is now he has no memory of them coming and going. Plus, he does not remember basic things for hours, He does not recognize things or people for hours. It is sad that this disorder has gone on with little awareness and funding to find a cure! It is a horrible desease and sad that the world still hides it and is ignorant to what it is! Meds, he was everything out there! Diets he tried them! Surgery did it! What is next???? oh, prayers all across the world in every domination! nothing has worked!

  • Posted By: starinajar @ 10/12/2009 6:18:40 PM

    THANK YOU Newsweek for publishing this article. Like many others who have commented, I believe that epilepsy is something that others are scared of because they are unaware of what it really is. I'm 21 and have suffered from epilepsy since I was 13 years old. I think it's somewhat genetic for me... there is a history of neurological conditions that affect my mom's family; her mom had Huntington's disease, and my mom's sister also had epilepsy. I don't like having to live with the fear of others labeling me as insane or 'possessed' if they are ignorant as to what epilepsy really is. I think it's time that the world should see epilepsy for what it really is, and treat it like any other condition... most people don't stigmatize cancer or heart disease..

    I've been lucky enough to have a generally mild case of epilepsy. I have only had a seizure once a year until two years ago, when I started adjusting my medication. I now take Tegretol 100 mg daily and it has made me hypothyroid and therefore I have gained quite a bit of weight over the years. The reason why I adjusted my medication was because of the side effects. Of course, the rest of the world automatically assumes that if you gain weight, you're eating too many sweets and fried foods. Unfortunately, I have not had the best luck with doctors. The very first medication he put me on was Depakote at 14 years old... Depakote is not to be used as the first treatment choice for women of childbearing age unless the case is more severe; mine wasn't. There are studies that show that Depakote can increase a woman's chance of getting PCOS by up to 50%. I am very, very thankful that I listened to my own body and got off of it within 2 months due to the weight gain. My neurologist didn't even mention this to me before putting me on it. It was only earlier this year that I confirmed this fact with my family doctor. I am glad that others who have more severe cases than I do can confide in better doctors who listen to their patients and really help them.

    During my last seizure in the summer, I fell on the corner of a raised platform made from bathroom tile. It dug out almost all the flesh in my knee. I had to get stitches to fix it, and while my knee looks normal (other than the scar), I can't lean on it without it being painful. Since then, I have seen a naturopath, who I really hope can help me control my seizures while I lower my dose of Tegretol.

    All in all, I'm just glad that this article has been published in a popular magazine so that others can learn about epilepsy and not fear it as they may have done in the past. Great job!

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