Doctors Sound Alarm Over How Cause of Epilepsy Deaths Are Reported


(Photo: Getty Images)

If you have epilepsy, you have a 27-fold greater risk of sudden death than people without the disorder. But that risk could be lowered substantially if patients and the general public understood the deadly risks of epilepsy, which can masquerade as heart disease, obesity and addiction, according to an opinion paper published in the journal Neurology by researchers at the NYU Langone Medical Center.

Doctors often don’t communicate the sudden death risks of epilepsy, said article lead author Dr. Orrin Devinsky, a professor of neurology, neurosurgery and psychiatry and director of the Comprehensive Epilepsy Center at NYU Langone.

“It’s been a failure of our medical system,” Devinsky told Yahoo Health. “Most people learn about sudden death from epilepsy on the Internet or from sources other than their physician. If you knew that your heart disease could cause a heart attack and kill you, you would be more likely to take your medication. If you’re a 27-year-old with epilepsy, you might become sleep deprived or drink a lot and think the worst thing that could happen to you would be to have seizures. But the worst thing that could happen is that you could have a seizure and die.”

Related: Scientists Just Might Have Revolutionized Brain Medicine

Epileptic seizures occur when normal electrical brain charges become interrupted by sudden, intense bursts of electrical energy, causing convulsions, muscle spasms, perhaps strange sensations and emotions, even loss of consciousness, according to Citizens United for Research in Epilepsy (CURE), which funds epilepsy research. An estimated 3 million people in the U.S. currently live with epilepsy; 1 in 26 Americans will develop the disease in their lifetime, according to CURE.

Most people are familiar with epileptic convulsions; but other sudden death events connected to poorly managed epilepsy go unrecognized and under-reported, the NYU researchers concluded. These catastrophic incidents include deaths from drowning, car and bike accidents, pneumonia from aspiration, falls, burns and suicide – about 5,000 deaths a year that could be rooted in the brain disease.

Related: Why Parents of Children with Epilepsy Are Increasingly Turning to Marijuana

Researchers say that the inability to accurately count epilepsy-related deaths impeded improving care. They looked at two epilepsy studies – one in Ohio, the other in Finland – and noticed the incidence of sudden unexpected deaths from epilepsy was significantly different. The Ohio study identified these sudden deaths in 0.01 per 1,000 patient years of life, while the Finnish study reported 2.6 cases per 1,000 patient years.

The differences are rooted in the different methods of determining cause of death, the researchers concluded. The Ohio study relied on information found on death certificates, while the Finnish study delved deeper into clinical records, death investigations and autopsy results. Autopsies are more common in Finland than in the U.S.

Devinsky says that patient and public education about epilepsy risks and related sudden deaths could “save thousands of lives.”

Death from epilepsy is “an enormous problem that kills at least 5,000 Americans a year, many more deaths than from SIDS (Sudden Infant Death Syndrome) and fires combined,” he says.

Devinsky says epilepsy mortality could be reduced if cases of sudden death from the disease were more accurately counted; if the real consequences of the disease was publicly discussed; and if patients had systematic reminders to take medication, get plenty of sleep and avoid alcohol.

These educational campaigns, however, have “never gotten off the ground,” Devinsky told Yahoo Health. “It’s a crime.”

Related: Study Finds Humans Are Really Good at Sleeping