Orrin Devinsky MD talks about SUDEP. Visit TalkAboutIt.org to watch more celebrity and expert interviews.

Untitled by Lauren Gray

"Untitled" by Lauren G., Epilepsy Foundation of Georgia Studio E participant

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. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. 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.  Learn how to get the best care and decrease your risk for SUDEP

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Where can I get more information on SUDEP?

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

Please, read our page on support for bereaved families. 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, and press option 1 to speak with an Information Specialist.

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: Cyndi Wright | Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 8/2013
Reviewed by: Cyndi Wright on 7/2014
The SUDEP Institute

Learn how the SUDEP Institute is working to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP.

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