The mystery of Sudden Death in Epilepsy

October 28, 2019 | by Edward-Elmhurst Health
Categories: Healthy Driven Life

The recent death of 20-year-old Disney Channel star Cameron Boyce has brought an increased awareness of Sudden Unexpected Death in Epilepsy, or SUDEP.

According to the Centers for Disease Control and Prevention, SUDEP is the cause of death of one in every 1,000 people diagnosed with epilepsy.

SUDEP is the sudden, unexpected and unexplained death of a person who has epilepsy and was otherwise healthy. SUDEP does not include deaths caused by drowning or injury from seizures.

"There was no indication that anything was wrong," Boyce’s father, Victor Boyce, told Good Morning America in a recent interview. "I mean there was no way to know in hours my son would be dead. Like, it was just staggeringly crazy and horrible. And we were texting that night."

The reason for the cause of death in SUDEP remains unclear and varies. However, the majority of SUDEP cases, including Boyce’s death, occur immediately following a seizure, and often at night.

Experts believe that in many cases, SUDEP can be caused by disruptions in breathing during or after a seizure. If the disruption lasts too long, it can reduce oxygen levels to life-threatening levels. In some cases, seizures may also create an obstruction in the airway. The seizure may also cause a dangerous heart rhythm that could lead to heart failure.

Though researchers are still learning about SUDEP, there are some risk factors to be aware of:

  • Uncontrolled or frequent seizures
  • Tonic-clonic or grand mal seizures
  • Living with epilepsy for many years
  • Missing medication doses
  • Drinking alcohol
  • Seizures that started at a young age

It is estimated that 3,000 people die each year in the United States from SUDEP, though some experts believe the actual number is higher because a lack of awareness of SUDEP has led some deaths to be misreported.

Doctors have recently begun to better understand SUDEP and are more likely to discuss SUDEP with their patients than in the past. Just a decade ago, many in the medical profession did not discuss SUDEP because they did not wish to overly worry parents or patients, experts have noted.

But, experts today note that more awareness is needed, particularly when it comes to steps patients can take to help lower their risk for SUDEP, including:

  • Take medications as directed by your physician. If medications are not working, consult with your physician.
  • Get enough sleep.
  • Limit alcohol consumption.
  • Know your seizure triggers, such as stress or lack of sleep, and avoid or manage them as best as possible.
  • If you live with other people, train them on first aid and what to do in the event of a seizure.
  • Use monitoring devices, similar to a baby monitor or motion monitor, to alert others if you have a nighttime seizure. However, the reliability and accuracy of such devices has received mixed reviews.

Though the thought of SUDEP can be scary, experts also encourage patients to find ways to manage their epilepsy so they can still live their lives.

In her interview, Boyce’s mother, Libby, noted that if she knew SUDEP was a possibility, she would have had her son at her side at all times, a solution she acknowledged would not have been acceptable to her son.

Be sure to talk to your doctor about an epilepsy care plan and steps you can take to minimize your risk for seizures and other complications.

Visit the Epilepsy Foundation for information on the organization’s #AimForZero campaign to help reduce the risk of SUDEP.

Edward-Elmhurst Health’s neuroscience experts provide world-class care for diseases, disorders and injuries of the brain, spinal cord and nervous system, including epilepsy. Learn more.

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