In rare cases, seizures that cause convulsions and a loss of consciousness can raise the odds of sudden death in people with epilepsy, neurologists warn.
These attacks are known as generalized tonic-clonic seizures, according to a new guideline from the American Academy of Neurology (AAN) and the American Epilepsy Society.
Just how rare is sudden death linked to these seizures? According to guideline researchers, these tragedies occur in 1 in 1,000 men and women each year and only 1 in 4,500 children annually.
Still, although rare, it’s crucial that the possibility of sudden death linked to seizures and risk factors for these events “are communicated to persons and families affected by epilepsy,” said guideline author Dr. Cynthia Harden. She’s with Mount Sinai Health System in New York City.
“Our guideline brings clarity to the discussion, giving health care providers practical information they can use to help people with epilepsy reduce their risk,” Harden said in an AAN news release.
Epilepsy experts agreed that patient education is key.
“Better understanding of this information may help to encourage people with epilepsy to take their medications regularly, promote a healthier lifestyle, and consider all potential medical and surgical treatment options to achieve seizure freedom and lower their risk,” said Dr. Meghan Fleming. She’s an epilepsy specialist at Lenox Hill Hospital in New York City.
The new guideline found that people with three or more tonic-clonic seizures a year are 15 times more likely to die unexpectedly than people who do not have these types of seizures.
“Educating health professionals and people with epilepsy about [the risk of sudden death] is an important first step,” said Harden.
“This guideline makes the conversation much easier with information that may motivate people to take their medications on time, to never skip taking their medications and to learn and manage their seizure triggers so they can work toward reducing seizures. People who follow their medication schedule or pursue other treatments such as surgery may be more likely to become seizure-free,” she said.
The AAN also advises doctors to work with their patients to prevent seizures, weighing the risks and benefits of medication or surgery.
Dr. David Friedman directs the Comprehensive Epilepsy Center at NYU Winthrop Hospital in Mineola, N.Y. He agreed that the guideline “emphasizes optimizing seizure control” as a means of avoiding the very rare but potential risk of death.
The new guideline was presented April 24 at the AAN’s annual meeting, in Boston. It was also published online in the journal Neurology.
The U.S. Centers for Disease Control and Prevention provides more information on sudden unexpected death in epilepsy (SUDEP).