BOSTON

WHENEVER THE MEDIA report on medicines that may have life-threatening complications, the public understandably becomes alarmed. But what happens if patients become needlessly worried and stop taking medicine that helps to maintain their health? With epilepsy, a neurological condition characterized by recurrent seizures that can range from hardly noticeable to severe, the results of stopping medication can be serious and even life-threatening.

The Food and Drug Administration (FDA) recently posted an alert to physicians and the public based on its review of 11 different anti-epileptic drugs. The report focused on a statistical association between these AEDs and thoughts patients had about suicide and their plans for suicide, although they might not necessarily go through with it. Together, thoughts of suicide and making plans are called suicidality.

The FDA studied the records of nearly 44,000 clinical-trial participants who were taking these 11 AEDs, not only for epilepsy but also for different psychiatric and medical conditions. Overall, the FDA reported suicidality in twice as many patients taking one of the AEDs as compared with those who took a placebo (inactive pill).

But what does “twice as many” really mean? Among patients in the epilepsy trials, 1 out of 1,000 people taking the placebo had suicidality compared with about 3.5 out of 1,000 people who took an AED. My colleague Orrin Devinsky, M.D., director of the Epilepsy Center at New York University and co-founder of the Epilepsy Therapy Project, put it this way: “Even in this select group of patients, 996 out of 1,000 people did not have suicidal thoughts or behavior. This means that patients receiving AEDs for epilepsy rarely displayed suicidality.”

Another colleague, Andres M. Kanner, M.D., a professor of neurological sciences at Rush Medical College, in Chicago, in an interview with www.epilepsy.com, said, “When news such as ‘twice the risk’ surfaces, people may stop taking their AEDs. When people with epilepsy stop taking medication as prescribed, it could result in significant worsening of seizures as well as a worsening of depression and anxiety symptoms.”

Let’s keep in mind that depression and anxiety in people with epilepsy occur frequently and some AEDs included in the FDA analysis are actually mood-stabilizing for many patients.

The FDA alert was intended to let patients know about the risks, and more research is needed to better understand the findings. In the meantime, patients with epilepsy and their families should put this information into perspective when talking with their treating physicians. As always, and as a team, they must weigh the possible risks against the potential benefits of AEDs before deciding on treatment for epilepsy. They should also stay in close touch with one another so that possible side-effects are identified early and resolved quickly.

The FDA alert has brought about increased awareness of epilepsy and its treatment. Awareness gets people talking. Learning about epilepsy helps eliminate the stigma. And education helps mobilize resources to find new therapies. Too many people still have seizures that are uncontrolled by treatments. By encouraging development of new therapies, and getting these quickly to patients, people with epilepsy might enjoy life free of seizures and treatment-related side-effects.

Steven C. Schachter, M.D., is a professor of neurology at the Harvard Medical School, an epilepsy specialist at Beth Israel Deaconess Medical Center, in Boston, first vice president of the American Epilepsy Society, and editor-in-chief of www.epilepsy.com.