What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture

Treatment goals for epilepsy are no seizures, no side effects, as soon as possible, but these goals are too often unmet. Approximately 1 million people in the United States continue to have seizures despite adequate treatment with antiseizure drugs, representing 40% of those with epilepsy, and 80% of the cost of epilepsy. Drug-resistant epilepsy (DRE) can be associated with developmental delay in infants and young children, and severe disability and morbidity in older children and adults, as well as a mortality rate 5-10 times that of the general population. While diagnosis and treatment at a full-service (levels 3 and 4) epilepsy center are demonstrated to improve seizure control, fewer than 1% of people with DRE are referred, and those who are, are referred an average of over 20 years after onset of habitual seizures. A possible reason for this is the misconception that all these epilepsy centers offer is surgery. Specialized multidisciplinary teams, consisting of neurologists, clinical neurophysiologists, neurosurgeons, neuroradiologists, psychologists, psychiatrists, social workers, and counselors, which constitute full-service epilepsy centers, can recognize and address pseudopharmacoresistance due to nonadherence, seizures that are not epilepsy, treatable underlying conditions, misdiagnosis of epilepsy syndromes, treatment with the wrong drug or wrong dosage, and lifestyle issues that are remediable. A variety of alternative treatment approaches are offered in addition to surgery, and for patients who continue to have seizures, full-service epilepsy centers have psychologists, psychiatrists, social workers, and counselors specialized in recognizing, and addressing, the psychological and social challenges experienced by people with epilepsy. Surgery for epilepsy remains, arguably, the most underutilized of all acceptable medical interventions, and the reasons for this are unclear. Often, excellent surgical candidates are not recognized as such by general neurologists, but if more patients with DRE were referred to full-service epilepsy centers, more surgical candidates would be identified by epilepsy specialists. All patients with medication-resistant epilepsy, defined as failure of 2 appropriate trials of antiseizure drugs due to inefficacy and not intolerance, who continue to be compromised by seizures deserve a timely consultation at a full-service epilepsy center. Early referral provides the best opportunity to avoid irreversible psychological and social problems, a lifetime of disability, and premature death.