What is SUDEP?
SUDEP is the abbreviation for Sudden Unexpected Death in Epilepsy. According to the Epilepsy Foundation SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.
Risk factors for SUDEP
SUDEP can occur to anyone with epilepsy but some people have higher risk factors than others. According to CURE Epilepsy the top risk factors include:
Having more than three generalized tonic-clonic seizures per year
Generalized tonic-clonic seizures
Not taking medications as prescribed
Early age of epilepsy onset
Uncontrolled or frequent seizures
The different sources have conflicting SUDEP statistics based on the many studies into SUDEP. The Centers for Disease Control and Prevention (CDC) explains SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1 Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.
Most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but these are possible factors:
Breathing. A seizure may cause a person to have pauses in breathing (apnea). If these pauses last too long, they can reduce the oxygen in the blood to a life-threatening level. In addition, during a convulsive seizure a person’s airway sometimes may get covered or obstructed, leading to suffocation.
Heart rhythm. A seizure may cause a dangerous heart rhythm or cardiac arrest.
Other causes and mixed causes. SUDEP may result from more than one cause or a combination involving both breathing difficulty and abnormal heart rhythm.
Reducing the risk of SUDEP
Take medication as prescribed
Avoid know seizure triggers
Get enough sleep
Avoid drinking alcohol
Train family in seizure first aid
Consider night-time monitoring
The Epilepsy Foundation says the best way to manage your seizures is through the right preparation, the right treatment, and teamwork. Learn how to track seizures, manage your seizure triggers, and work with your healthcare team to take control of your seizures and epilepsy.
So how is SUDEP determined?
CURE Epilepsy explains in most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:
The person has epilepsy, which is defined as recurrent unprovoked seizures
The person died unexpectedly while in a reasonable state of health
The death occurred suddenly
The death occurred during normal activity (often during sleep and found in or near the bed)
An obvious medical cause of death could not be determined at autopsy
The death was not the direct result of status epilepticus
Several epilepsy related foundations have been working hard to raise awareness through families sharing personal stories and distribution of educational materials. One example is The Cameron Boyce Foundation that was established in 2019. Cameron Boyce was an actor and humanitarian that died of SUDEP in 2019 at the age of 20 years old. The Disney star’s family decided to utilize his fame to raise awareness of SUDEP and continue working towards a cure for epilepsy.
By Jamie Thomsen R. EEG T., CNIM, CLTM
Epilepsy Foundation- SUDEP Education & Awareness
CURE Epilepsy- SUDEP
Centers for Disease Control and Prevention (CDC)- Sudden Unexpected Death in Epilepsy (SUDEP)
The Cameron Boyce Foundation