Circumstances of Sudden Death in Epilepsy revealed by study of North American SUDEP Registry

Sudden unexpected death in epilepsy (SUDEP) is rare. About one in 1,000 people with epilepsy die from SUDEP per year.

A new study published in the online issue of the journal Neurology last week has provided much needed information on the circumstances of SUDEP and has shed new light on risk factors for SUDEP.

Researchers led by Prof. Orrin Devinsky of NYU Langone Health in New York reviewed cases referred to the North American SUDEP Registry, from 2011 to 2018. For the 237 cases with definite or probably SUDEP, the researchers collected information from family members and medical records.

Some of their key findings include:

  • The median age of those who died was 26, with ages ranging from one to 70 years old.
  • In nearly all of the cases, 93%, no one witnessed the death.
  • 70% of the deaths occurred during sleep.
  • Only 37% of the people had reportedly taken their last prescribed dose of epilepsy medication. Family members said that overall 34% did not always follow their medication treatment, either from forgetting to take doses, taking lower doses to reduce side effects or intentionally skipping or stopping taking their medication.
  • 15% of the people had been free of seizures in the year before their death.
  • 33% of the people had experienced fewer than 10 generalized tonic-clonic seizures in their lives. 4% had none.
  • 15% were reported to be sleep deprived at the time of death.
  • Only 16% of family members had heard of SUDEP.

Perhaps the most important information from this study is that while SUDEP is most common in people with intractable epilepsy, it can also affect the full spectrum of types of epilepsy, even ones that are typically considered 'benign’. Previous studies have shown that people who have recent and a high frequency of generalized tonic-clonic seizures are more likely to die suddenly.

In an accompanying press release, Prof Devinsky said, “Since sudden death can happen to anyone with epilepsy, doctors need to discuss this rare possibility with people with epilepsy and their families. They need to understand the critical--and potentially life-saving--importance of taking their medications on time and not skipping their medications or taking less than their prescribed dose.”

The researchers identify a number of limitations of their study. For example, as many cases were referred to the registry by family members or through patient advocacy groups, they may not be reflective of the general population of people with epilepsy. Also, much information was gained through interviews with family members, who may not have had all information or may not remember it accurately.

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