3 million Americans live with epilepsy. How common is sudden unexpected death in epilepsy?

Published: July 12, 2019 | Updated: September 19, 2024

When actor Cameron Boyce, a star of the Disney Channel show “Jessie,” died at age 20, his family said in a statement that his sudden death was due to a seizure during sleep. According to the family, the actor was receiving ongoing treatment for the seizure disorder epilepsy.

The Centers for Disease Control and Prevention (CDC) states that 3 million adults live with epilepsy in the U.S. How common is it for a person with epilepsy to experience sudden unexpected death in epilepsy (SUDEP)?

Many did not know that the young actor, who was in the movies “Grown Ups” and “Grown Ups 2” had epilepsy. Epilepsy is a neurological disorder in which abnormal brain activity causes repeated seizures. A seizure is an electrical disturbance in the brain that can last from 30 seconds to two minutes. There are many types of epilepsy conditions. Epilepsy can begin to appear at different ages, as young as infancy. Often, there is no known cause of epilepsy for patients. In some cases, it can be related to an injury or other condition, including a head injury, brain tumor, stroke, or infections such as meningitis. Epilepsy treatment depends on the type; some types are easily treated and managed by medicines, and others may be severe and require surgery.

What is sudden unexpected death in epilepsy (SUDEP)?

SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning or other known causes, according to the CDC. Studies show that there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy every year, although estimates vary.

Many cases of SUDEP, but not all, happen during or immediately following a seizure. What causes SUDEP is unknown, but possible reasons include:

• Breathing issue caused by seizure:A seizure may cause a person to have apnea, a pause in his or her breathing. These pauses can reduce the oxygen levels in the blood to a life-threatening level if they last too long. A convulsive seizure also may cause a person’s airway to be obstructed, leading to suffocation.
• Heart issues:A seizure may cause a dangerous, abnormal heart rhythm or even heart failure. This is rare.
• Other health issues and combination of issues: SUDEP can result from several causes or a combination of issues, including breathing issues and abnormal heart rhythm.

Who is at risk for SUDEP?

According to the CDC, the main risk factors for SUDEP include:

• Uncontrolled epilepsy or frequent seizures
• Generalized convulsive (also called tonic-clonicor grand mal) seizures

Other risk factors may include:

• Early onset of epilepsy
• Drinking alcohol
• Missing medication doses
• Living with lifelong epilepsy

What can you do to lower SUDEP risk?

Following your epilepsy treatment plan and avoiding seizure triggers, if they are known, as well as avoiding excessive alcohol, may help lower your risk.

Epilepsy care at Norton Neuroscience Institute

Norton Neuroscience Institute offers comprehensive care for epilepsy, which means we see patients across the full spectrum of the disorder. The National Association of Epilepsy Centers has recognized Norton Neuroscience Institute Comprehensive Epilepsy Center as a Level 4 Epilepsy Center. The designation means we provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy.

Our comprehensive epilepsy treatment program provides:

• Community outreach through free educational seminars for patients, families and physicians
• Comprehensive presurgical evaluations for patients with refractory epilepsy, meaning medications are failing to control the epilepsy
• Epilepsy monitoring unit admission wait time typically less than two weeks
• Neurosurgery appointments in less than two days
• Individualized therapy directed by a multidisciplinary team of physicians
• Treatment options ranging from medication and diet management to surgical therapies
• Support services, including psychiatry and physical, occupational and cognitive therapies