Featuring the work of former CURE Grantee Dr. Elizabeth Donner
People with epilepsy have a rare risk of sudden death. A new study shows that risk may apply even to people whose epilepsy is well-controlled, which is contrary to previous, smaller studies that showed the risk was highest among those with severe, difficult-to-treat epilepsy. The new study is published in the June 19, 2019, online issue of Neurology, the medical journal of the American Academy of Neurology.
The study also found that sudden death occurred in people who had not taken their last dose of epilepsy medication, those who were sleep deprived and people who had not had a seizure in at least a year.
“Since sudden death can happen to anyone with epilepsy, doctors need to discuss this rare possibility with people with epilepsy and their families,” said study author Orrin Devinsky, MD, of NYU Langone Health in New York City and a Fellow of the American Academy of Neurology. “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.”
For the study, researchers reviewed cases referred to the North American SUDEP Registry, which was established in 2011. For the 237 cases with definite or probably SUDEP, researchers collected information from family members and medical records.
The median age of those who died was 26, with ages ranging from one to 70.
In nearly all of the cases, 93 percent, no one witnessed the death. A total of 70 percent of the deaths occurred during sleep.
Only 37 percent of the people had reportedly taken their last prescribed dose of epilepsy medication. Family members said that overall 34 percent 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. Eleven percent had never been prescribed medication for epilepsy.
Fifteen percent of the people had been free of seizures in the year before their death.