Even people with well-controlled epilepsy may be at risk for sudden death

People with epilepsy have a rare risk of sudden death. A new study shows that the risk can even apply to people with well-controlled epilepsy, which is contrary to previous smaller studies showing that the risk was higher in people with severe epilepsy and difficult to control. treat. The new study is published in the June 19, 2019 online edition Neurology, the medical journal of the American Academy of Neurology.

Unexpected sudden death related to epilepsy, or SUDEP, with no known cause, affects about one in 1,000 people with epilepsy a year.

The study also revealed that sudden death had occurred in people who had not taken their last dose of medication for epilepsy, sleep deprived people and people who have not had a crisis for at least a year.

"Sudden death can happen to anyone with epilepsy, doctors must discuss this rare possibility with people with epilepsy and their families," said the author of the epilepsy. study, Orrin Devinsky, MD, of NYU Langone Health in New York and member of the American Academy of Neurology. "They need to understand the crucial – and potentially vital – importance of taking their medications on time and not forgetting them or taking less than the prescribed dose."

For this study, researchers reviewed cases referred to the North American SUDEP registry, created in 2011. For the 237 cases associated with a certain or probable SUDEP, researchers collected information from family members and records. medical.

The median age of the deceased was 26, from 1 to 70 years old.

In almost all cases, 93%, no one witnessed the death. In total, 70% of deaths occurred during sleep.

Only 37% of people would have taken their last prescribed dose of drugs for epilepsy. Family members reported that, overall, 34% did not always follow their drug regimen, either forgetting to take doses, taking lower doses to reduce side effects, or skipping or stopping taking their medication. Eleven percent had never been prescribed drugs for epilepsy.

Fifteen percent of the population had no seizures in the year prior to death.

Previous studies have shown that people with generalized recent tonic-clonic seizures are more likely to die suddenly. These types of seizures affect the entire brain and body and lead to convulsions and loss of consciousness. But the current study found that 33% of people had fewer than 10 generalized tonic-clonic seizures in their lives, 4% had none, and many of those who had experienced such seizures said they had mastered well. their crises before their death.

"While SUDEP is more common in people with persistent epilepsy, our results show that it affects all types of epilepsy, even those who are generally considered" benign ", said Devinsky.

Of the 157 people with information on the circumstances surrounding their deaths, 15% were reported to have been deprived of sleep at the time of their death. "Since sleep deprivation is a factor that can cause a crisis, it can be a risk factor for SUDEP," Devinsky said.

Only 16% of family members had heard of SUDEP.

Devinsky said that the registry data is available to other researchers to accelerate understanding of the risk factors and mechanisms underlying SUDEP and to advance prevention strategies.

The limitations of the study include the fact that many cases have been referred to the registry by family members or through advocacy groups; therefore, they may not correspond to the general population of people with epilepsy. In addition, much information was obtained during interviews with family members, who may not have all the information or may not remember it correctly. In addition, there was no control group of people with epilepsy who died from other causes or people living with epilepsy.

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