Epilepsy and sudden death: Personal reflections and call for global action

To solve the mystery of sudden unexpected death in persons with epilepsy (SUDEP), a global focus is needed to identify persons at risk, develop treatment regimens, and prevent its occurrence. A world wide network of professionals must focus on basic scientific research programs and clinical and epidemiology studies. Team work among different multidisciplinary professionals in clinical settings and within and among laboratories should address the global issues of SUDEP. If the correct term ‘SUDEP’ is used on autopsy reports and if verbal autopsies postmortem are conducted when needed, the true incidence of SUDEP may be found to be much higher than previously thought and the market for new antiepileptics and other drugs to prevent SUDEP will be larger. Symposia should discuss new data and lessons learned from the last 20 to 30 years to be applied by scientists and clinicians worldwide to gain a better understanding of SUDEP. ‘Think out of the box’ when evaluating an established animal model with potential for modification(s) to study mechanism(s) of SUDEP. Multiple relevant animal models are needed to understand the pathophysiology of SUDEP, hypothesize about effective treatments, develop small pilot studies in persons with epilepsy, and conduct confirmatory large-scale clinical trials. The fields of pharmacology, clinical pharmacology, and cardiology have much to offer as we work to improve compliance, develop new antiepileptic drugs, and apply different categories of drugs to resolve the mystery of SUDEP. Ambulatory simultaneous EKG and EEG telemetry monitoring of patients at risk for sudden death will help identify cardiac vs. brain epileptogenic triggers for treatment to decrease risk of SUDEP. Respiratory function monitoring is also needed. Academic fellowships and competitions for medical students, postdoctoral fellows, residents and faculty will attract medical and graduate trainees to work on SUDEP. Grant funding is essential to move the SUDEP knowledge base forward. Leaders must solve the global mystery of SUDEP using a leadership philosophy foundation that provides innovative vision and approaches for SUDEP research and teaching programs. The interaction of teaching and research is essential: while a student is learning how to conduct research he must simultaneously learn to become a teacher. Medical and graduate leaders must provide vision and a fertile environment to teach students of today to become the self learners and leaders of tomorrow to find solutions for SUDEP.