If you or someone you love has epilepsy, you may have heard the term SUDEP. If you haven’t, SUDEP stands for Sudden Unexpected Death in Epilepsy. It’s not something anyone wants to think (or talk) about, but understanding SUDEP—and how to minimize risks—is a vital part of living safely with epilepsy. Knowing the facts can empower you to develop effective strategies with your medical team to reduce your risk and enhance your overall care.
What Is SUDEP?
Epilepsy is a complex neurological disorder described as abnormal electrical brain activity that causes seizures.[1] Although it’s considered a rare occurrence, if you have seizures, you have a risk of dying suddenly and unexpectedly, called SUDEP.
Sudden Unexpected Death in Epilepsy (SUDEP) refers to a sudden, non-traumatic, and non-drowning death in someone with epilepsy, where no other cause of death is found during an autopsy.[2
Seizure-related death usually occurs during or immediately after an episode, especially generalized tonic-clonic seizures. It often happens during sleep, and many individuals are found lying face down in bed.[1]
Why Does Sudden Death From Epilepsy Happen?
Experts believe SUDEP may be triggered by a chain reaction during a seizure: difficulty breathing, irregular heartbeats, and suppressed brain activity can all contribute.[3] It tends to happen more often during uncontrolled seizures, mainly if they occur at night.
While the exact cause isn’t understood, research suggests that SUDEP may be due to abnormal heart rhythms, breathing issues, or brain function problems following a seizure.[4] In many cases, the person has a seizure while alone and is not repositioned or helped if breathing becomes impaired.[5]
People with frequent generalized tonic-clonic seizures, especially those who don’t take or respond to medication, are at the highest risk.[6]
Is Early Death or SUDEP Common?
SUDEP is rare, but it’s the leading cause of epilepsy-related mortality. The risk is about 1 in 1,000 adults and 1 in 4,500 children with epilepsy per year.[7] However, the risk increases if seizures are uncontrolled or frequent.[8]
Younger adults between 20 and 40 years old are affected more than initially thought.[9]
Can Epilepsy-Related Death Be Prevented?
While there’s no guaranteed way to prevent SUDEP, managing epilepsy effectively is the best strategy.
You can lower your risk by:
- Taking your anti-seizure medications consistently [2]
- Tracking your seizure patterns
- Having your medication adjusted if your seizures increase or return [10]
- Avoiding known triggers like lack of sleep, stress, missed doses, alcohol, drugs or exhaustion [10]
- Following a ketogenic diet (low-carb, high-fat) [10]
- Having regular check-ins with your neurologist
- Considering seizure alert devices or monitors [5]
People who have surgery, neurostimulation devices, or better seizure control from medication may see their SUDEP risk drop significantly.[11]
I Have Epilepsy. How Can I Lower My Risk of Seizure-Related Death?
A great question to discuss with your doctor. The answer is empowering and can help you feel more in control of your life with less fear and more focus on the things that matter.
Here’s how you can take charge of your life:
Stick to your treatment plan. Never stop medications without your doctor’s guidance.
Talk about SUDEP with your doctor. It’s hard, but honest conversations lead to better planning and safety.
Involve your care team: family, friends, and school or work contacts should be aware of what to do in case of a seizure.
Consider nighttime monitoring, especially if you live alone or have frequent nocturnal seizures.[12]
Planning Ahead Can Offer Peace of Mind: If you live alone, taking a few simple steps, such as using seizure monitors and keeping emergency contacts readily available, can go a long way toward staying protected and connected.[13]
Epileptic Seizures and Sleep
Sleep plays a significant role in epilepsy. Many SUDEP cases occur at night, likely due to changes in brain activity during sleep and the lack of supervision.[14]
Maintaining a consistent sleep schedule, avoiding screen time before bed, and using nocturnal seizure monitors can help mitigate the risk of seizures overnight.
Why It Matters to Talk About Seizure-Related Death
Talking about SUDEP isn’t about fear—it’s about empowerment. The more you know, the more you can do to stay safe and take control of your health. SUDEP is rare, but your life is essential, and your care plan should reflect that.
While there is no cure to prevent seizure-related death, taking steps to reduce the risk is crucial. A healthy diet, stress management and regular exercise can help you feel better and minimize seizure triggers. Extra steps like ruling out heart problems and other conditions can ensure seizures are related to epilepsy and not another underlying condition that can increase the risk of sudden death.
Do You or a Loved One Have Epilepsy? Discuss Your SUDEP Risks Now
Even if your seizures are well-controlled, it’s worth having the SUDEP conversation with your neurologist. Together, you can create a safety plan that works for you. Whether it’s adjusting medications, using monitoring devices, or just checking in more often, every step counts.
Disclaimer: This blog is for informational purposes only and is not a substitute for medical advice. Talk to your healthcare provider about any ongoing neurological symptoms, epilepsy or seizure-related issues. Seek emergency care or call 911 if a seizure lasts more than 5 minutes, if another seizure starts right after, if the person is injured, has trouble breathing, doesn’t wake up, or if it’s their first seizure.
Resources:
- SUDEP (Sudden Unexpected Death in Epilepsy). CURE Epilepsy [Internet]. Published August 21, 2024. Accessed July 29, 2025. Available from: https://www.cureepilepsy.org/understanding-epilepsy/epilepsy-basics/sudep-sudden-unexpected-death-in-epilepsy/
- Sudden unexpected death in epilepsy. CDC [Internet]. Published May 22, 2024. Accessed July 29, 2025. Available from: https://www.cdc.gov/epilepsy/sudep/index.html
- Giussani G, Falcicchio G, La Neve A, et al. Sudden unexpected death in epilepsy: A critical view of the literature. Epilepsia Open [Internet]. 2023;8(3):728-757. doi:10.1002/epi4.12722. Accessed July 29, 2025. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC10472423/
- Early-Death SUDEP. Epilepsy Foundation [Internet]. Published August 5, 2013. Accessed July 29, 2025. Available from: https://www.epilepsy.com/complications-risks/early-death-sudep
- About Sudden Unexpected Death in Epilepsy (SUDEP). Danny Did Foundation [Internet]. Accessed July 29, 2025. Available from: https://www.dannydid.org/about-sudep/
- Sudden Unexpected Death in Epilepsy (SUDEP). Epilepsy Alliance America [Internet]. Accessed July 29, 2025. Available from: https://epilepsyallianceamerica.org/learn-about-epilepsy/sudep/
- Sudden Unexpected Death in Epilepsy (SUDEP). American Academy of Pediatrics AAP [Internet]. Published 2020. Accessed July 29, 2025. Available from: https://www.aap.org/en/patient-care/epilepsy/understanding-pediatric-epilepsy/sudden-unexpected-death-in-epilepsy-sudep
- What Is Epilepsy? Epilepsy Foundation of Colorado and Wyoming [Internet]. Published March 4, 2022. Accessed July 29, 2025. Available from: https://epilepsycoloradowyoming.org/what-is-epilepsy/
- Sudden Unexplained Death in Epilepsy More Common in Younger Ages Than Thought. American Epilepsy Society AES [Internet]. Published 2020. Accessed July 29, 2025. Available from: https://aesnet.org/about/aes-press-room/press-releases/sudden-unexplained-death-in-epilepsy-more-common-in-younger-ages-than-thought
- InformedHealth.org [Internet]. Cologne, Germany: Institute for Quality and Efficiency in Health Care (IQWiG); 2006-. Epilepsy: Learn More – SUDEP: Sudden unexpected death in epilepsy. 2025 Apr 9. Accessed July 29, 2025. Available from: https://www.ncbi.nlm.nih.gov/books/NBK614260/
- Devinsky O, Spruill T, Thurman D, Friedman D. Recognizing and preventing epilepsy-related mortality: A call for action. Neurology. 2016;86(8):779-786. doi:10.1212/WNL.0000000000002253. Accessed July 29, 2025. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC4763802/
- How to Prevent SUDEP. Epilepsy Foundation [Internet]. Published 2019. Accessed July 29, 2025. Available from: https://www.epilepsy.com/complications-risks/early-death-sudep/preventing-sudep
- Lucchetti L. Sudden unexpected death (SUDEP) in epilepsy. Medical News Today [Internet]. Accessed July 29, 2025. Available from: https://www.medicalnewstoday.com/articles/sudden-unexpected-death-in-epilepsy#
- Sudden unexpected death in epilepsy (SUDEP) information. HealthEngine [Internet]. Published July 7, 2007. Accessed July 29, 2025. Available from: https://healthinfo.healthengine.com.au/sudden-unexpected-death-in-epilepsy-sudep#
