Everyone With Epilepsy at Risk of SUDEP—Few Are Aware of Risk

A new study published in Neurology shows people with well-controlled epilepsy are at risk of SUDEP. Researchers found SUDEP occurred in individuals who had not had a recorded seizure in the previous 12 months and those who missed a dose of antiepileptic medicine or were sleep deprived. The estimated incidence of SUDEP is 1 in 1,000 people with epilepsy per year, but only 16 percent of family members had heard of SUDEP. 

In 93% of the cases (n = 237), death was not witnessed; 70% of SUDEP occurred during sleep. In only 37% of cases, people had taken their last prescribed dose of epilepsy medication. Family members reported that 34% of the individuals who died from SUDEP did not always follow their medication protocol—they forgot to take doses, took lower doses to reduce side effects, or intentionally skipped or stopped taking their medication. Another 11% had not been prescribed antiepileptic medication, 15% were reported to be sleep-deprived, and 15% had been free of reported seizures in the previous year.

Although people with recent, frequent, generalized, tonic-clonic seizures have higher risk of SUDEP, the current study found that 33% of people who died from SUDEP experienced fewer than 10 generalized, tonic-clonic seizures in their lifetimes, and many had reported good seizure control before their death. 

“Since sleep deprivation is a factor that can provoke a seizure, it may be a risk factor for SUDEP,” said Orrin Devinsky, MD, NYU Langone Health, New York City. “While SUDEP is most common in people with intractable epilepsy, our findings show that SUDEP affects the full spectrum of types of epilepsy, even ones that are typically considered ‘benign,’” said Devinsky. “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 the prescribed dose.”

In this retrospective case-review study, 237 cases of definite or probable SUDEP were identified and researchers collected information from family members and medical records. The median age of those who died was 26 years (range 1-70 years).