SUDEP

 

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    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 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. 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.

    What Happens?

    The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. Over one-third of the time, there is a witnessed seizure or signs of a recent 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 and it may differ between cases. Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure lead to death.

    Can SUDEP Be Prevented?

    Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. Research has found that people with all types of epilepsy that experience convulsive seizures can be at risk.

    For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices, such as avoiding seizure triggers and including the support of an epilepsy specialist. And for people with the most severe types of difficult to control epilepsy, there are steps an individual can take to lower one’s risk, including epilepsy surgery, neurostimulation devices, dietary therapies, and participating in research to find new, more effective therapies.

    Spotlight: Ketogenic Diet And SUDEP

    Jeff Buchhalter, MD, PhD, talks about the ketogenic diet as a treatment for seizures and how its use might reduce the risk for SUDEP.

    Where Can I Get More Information On SUDEP?

    Knowledge Is Power

    Download our "Knowledge is Power" flyer for help seeking the best care and knowing what questions to ask your health care provider about your SUDEP risk.

    Get answers to frequently asked questions about SUDEP.

    Learn about the SUDEP program

    Sharing SUDEP Stories

    Share Your Story: EJourney

    Share your SUDEP story with the world. Whether you are a family member, friend, or caregiver that has been impacted by SUDEP – your story matters. Sharing written stories, videos and photographs helps create understanding, support and increases awareness about SUDEP.

    Through the power of eJourney, we can increase SUDEP awareness, help others to not feel so alone, and empower the community to help make a difference. Read eJourneys about SUDEP:

    #StartTheSUDEPConvo

    The Epilepsy Foundation has produced a video series to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP) and improve communication between patients and their healthcare providers. The videos honor the lives of those who have been lost to SUDEP and highlight stories of people who live with uncontrollable seizures and healthcare providers.

    To roll out the videos, the Epilepsy Foundation will be implementing a digital media campaign called #StartTheSUDEPConvo to inspire people to discuss SUDEP, educate people with epilepsy and their caregivers about the risks for SUDEP, and help them manage their epilepsy. The Foundation is planning to upload one video a month on its eJourney Community Blog starting April 4 and leading to SUDEP Action Day on October 19.

    These videos will also be shared on the Foundation’s social media channels, including Facebook, Twitter, Instagram, and LinkedIn. In addition to sharing the #StartTheSUDEPConvo videos, the Epilepsy Foundation will post monthly educational content about 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 ensure that SUDEP gets the public awareness and research attention it deserves, the Epilepsy Foundation has launched the SUDEP program.

    WE RECOMMEND

    Support the SUDEP program

    SUDEP FAQ

    Authored By:

    Epilepsy Foundation SUDEP Program

    on Monday, August 05, 2013

    Reviewed By:

    Alison Kukla MPH

    on Tuesday, March 29, 2022

    Resources

    Epilepsy Centers

    Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

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    Epilepsy Medication

    Find in-depth information on anti-seizure medications so you know what to ask your doctor.

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    Epilepsy and Seizures 24/7 Helpline

    Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

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    Tools & Forms

    Download our seizure tracking app, print out seizure action plans, or explore other educational materials.

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