Sudden Unexpected Death in Epilepsy (SUDEP): Risks and Prevention

Sudden unexpected death in epilepsy (SUDEP) is a death in a person with epilepsy that is not caused by injury, drowning, status epilepticus or any other known cause. For some people living with epilepsy, it is a major worry.

It is rare

It is hard to know exactly how many people with epilepsy die of SUDEP each year, and researchers are studying it. Experts estimate that each year:

• about one in every 1,000 U.S. adults with epilepsy may die of SUDEP;
• in children, it is rarer still: about one in every 4,500 children aged 17 or younger with epilepsy.

What may cause it

Most SUDEP deaths happen during a generalised seizure in sleep. Possible reasons include:

• Breathing problems. A seizure can cause pauses in breathing (apnoea); if they last too long, oxygen in the blood falls. A person can also suffocate if the airway is covered or blocked.
• Heart problems. A seizure can cause a dangerous heart rhythm or a very slow heart rate.
• Other causes. A combination of breathing problems, abnormal heart rhythms or unknown causes; problems with brain function and genetic disorders may also contribute.

Who is most at risk

The main risk factors are generalised seizures, and seizures that are frequent or not controlled. Other possible risk factors:

• having had seizures from a young age;
• having lived with epilepsy for many years;
• being male;
• missing doses of seizure medicine;
• having seizures during sleep.

Lowering the risk

• Take your seizure medicine as prescribed. This is the most important thing you can do.
• Talk to your health care provider about your risk of SUDEP, and tell them straight away if you still have seizures while taking your medicine. If the seizures continue, consider seeing an epilepsy specialist; CDC's partner websites can help you find a doctor or an epilepsy centre near you.
• Avoid your seizure triggers, learn ways to manage or reduce your seizures, and get enough sleep.
• Train the adults in your household in seizure first aid.

What CDC is doing

CDC supports the Sudden Death in the Young (SDY) Case Registry, which identifies and counts SUDEP deaths among young people aged 20 and under, to understand their causes and prevent them.

Sources

• Centers for Disease Control and Prevention, "Sudden unexpected death in epilepsy." https://www.cdc.gov/epilepsy/sudep/index.html
• Two stock photographs are not reproduced here.