Page Summary

People who continue to have seizures are at greater risk of a number of complications, which is why preventing seizures and other problems is so important. The most serious complications are injuries and of course dying from seizures. This section gives frank information about one of the more common causes of dying from seizures called “Sudden Unexpected Death in Epilepsy”, which is abbreviated SUDEP.

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. SUDEP accounts for less than 2% of deaths among people with epilepsy.  Each year, about 1 out of 1,000 people with epilepsy die from SUDEP.  SUDEP occurs more often in people with frequent seizures. One in 150 people with uncontrolled seizures may die of SUDEP.  These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures. 

What happens?

The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

Can SUDEP be prevented?

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures.  Paying attention to managing your seizure medications as best as possible, taking them regularly, and preventing seizures emergencies is all part of this.

Where can I get more information on SUDEP?

How can I prevent SUDEP?

The best way to prevent SUDEP is to have as few seizures as possible. Learn how to get the best care and decrease your risk for SUDEP

What can I do if I have lost a loved one to SUDEP?

Our support for bereaved families section is coming soon. You will be able to learn about the programs and services available for families who have lost a loved one to SUDEP. In the meantime, please email sudep@efa.org or call 1-800-332-1000.

What is the Epilepsy Foundation doing to prevent SUDEP?

To make sure that SUDEP gets the public awareness and research attention it deserves, the Epilepsy Foundation has launched the SUDEP Institute Learn more about the SUDEP Institute.

Authored by: Steven C. Schachter, MD | Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 8/2013
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 4/2014
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