SUDEP, sudden death in epilepsy, has an incidence of 1-2 cases per 1,000 patients with epilepsy per year.1
The recent tragic death of Cameron Boyce, a popular 20 year-old Disney star, has brought SUDEP and epilepsy to the public eye.
A study reviewed 237 SUDEP cases between October 2011 and June 2017 in the North American SUDEP Registry. Subjects were ages 1-70 years, the median age was 26. Women made up 38% of the study population.2 Researchers found that night sleep, usually considered the usual situation related to SUDEP deaths, is not necessarily the most common time when SUDEP occurs. Many patients in this registry died during daytime. Additionally, the mechanism of death may not be due to an obstruction of the airways but more likely is related to cardio-respiratory phenomena.
The study showed all ages and all epilepsy severeties are affected by SUDEP; it is not restricted to chronic poorly-controlled epilepsies. Anybody with epilepsy can experience SUDEP including patients with well-controlled or benign epilepsies, i.e., those with centrotemporal EEG spikes (the Rolandic Epilepsies that primarily occur during sleep and not while awake). The reported lifetime number of generalized tonic-clonic grand mal seizure counted in the study population ranged from zero to more than 500.
The most notable observation in the study was that a majority of these deaths occurred in people who did NOT take their last dose of antiseizure medication. This presents a chance to minimize the risk of SUDEP. Take your medications as prescribed!
Physicians need to discuss the risk of SUDEP with their patients, emphasizing the importance of never skipping an antiseizure medication dose. If your doctor doesn’t bring SUDEP up, YOU, the patient, should ask about it. Minimize alcohol and, additionally, get enough sleep.
Epilepsy surgery can be curative of epilepsy if you are a candidate. Discuss this option with your doctor. The shorter time interval between the onset of your epilepsy and the epilepsy surgery can achieve better results from surgery.3
1) Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia 2014;55: 1479-85.
2) Verducci C, Hussain F, Donner E et. al. SUDEP in the North American SUDEP Registry: the full spectrum of epilepsies. Neurology 2019;93:e226-e236.
3) Bjelivi J, Olsson I, Malmgren K, et. al. Epilepsy duration and seizure outcome in epilepsy surgery. Neurology 2019;93:e159-e166.