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Workshop on Nonepileptic Seizures

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Sponsored by the National Institute of Neurological Disorders and Stroke, the National Institute of Mental Health, and the American Epilepsy Society

May 1-3, 2005

Bethesda, Maryland

Psychological nonepileptic seizures (NES) are neuropsychiatric disorders that present with a combination of neurological signs, underlying psychological conflicts, and without associated epileptogenic pathology. Also known as pseudoseizures, hysterical seizures and by many other names, NES has fascinated and confounded neurologists and psychiatrists for centuries. Estimates range between 10 and 50 percent of patients with intractable epilepsy may have either pure NES or a combination of epileptic and nonepileptic seizures. In many cases, patients with NES have a history of psychiatric disorders and/or childhood trauma. And although there have been advances in understanding of many other shared disorders between neurology and psychology, NES is still situated in the gap between the disciplines and remains poorly studied. Questions and problems range from lack of a biological model, to issues of classification, to lack of tested intervention modalities. There are also significant differences between adults and children with NES.

On May 1-3, 2005, a small, international workshop was held to assess the state of the science and lay the groundwork to fill the treatment void. Sponsored by the National Institute of Neurological Disorders and Stroke, the National Institute of Mental Health, and the American Epilepsy Society, participants included neurologists, psychiatrists, psychologists, statisticians and allied health researchers. Discussion topics focused on: presenting the diagnosis, outcome measures for NES trials; pharmacologic treatment approaches; and psychotherapies such as cognitive behavioral therapy, hypnosis and group and family therapies. A separate group focused on issues of pediatric patients. The intent was to develop specific research strategies that can be expanded to involve a large segment of the epilepsy and psychiatric treatment communities. Several potential studies emerged from the breakout sessions. These included: (1) a multiple site inter-rater reliability study to evaluate the reliability of the diagnosis; (2) a multi-center observational study to identify which approach to presenting the NES diagnosis is most likely to result in treatment compliance; (3) a survey of comprehensive epilepsy centers to determine if there is a therapeutic standard of care; (4) a three arm, clinical trial to test efficacy of current treatments; (5) and a retrospective review of histories of children diagnosed with NES, combined with a prospective collection of information on behavior, cognitive testing, school performance, etc.

The workshop illustrated the need for collaborative research efforts among those treating patients with NES. The next step is to present the results of these preliminary discussions at the NES Special Interest Group at the AES meeting this December and at meetings of the psychiatric and nursing societies as well. Those attending considered this an important first step in a concerted effort to find "cures" for those with NES.

Contributions to this article by Margaret Jacobs, NINDS, Curt LaFrance, M.D., Brown University, Brandy Fureman, Ph.D., NINDS

Last updated June 27, 2006