Sudden Unexpected Death in Epilepsy (SUDEP): What You Need to Know
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Sudden Unexpected Death in Epilepsy (SUDEP): What You Need to Know

While SUDEP is a difficult topic to think about, understanding it can help alert you to harmful situations where SUDEP risk increases. The information below is meant to help educate and guide you in understanding SUDEP. As always, talk with your doctor about your risk for SUDEP and how to minimize it.


WHAT IS SUDEP?
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Get the facts...

SUDEP occurs when a person with a history of epilepsy dies suddenly or unexpectedly, with or without evidence of having had a seizure, and with no other cause of death evident in an autopsy.
Many parts of SUDEP remain unknown, but current and ongoing research reflects commonalities and risk factors.

  • SUDEP usually happens at night.
  • SUDEP is most prevalent in indviduals living with uncontrolled seizures.
  • More than 1 in 150 people with uncontrolled seizures die from SUDEP every year.
  • SUDEP is the leading cause of epilepsy-related mortality.
  • SUDEP is more common than Sudden Infant Death Syndrome (SIDS) in the US.
  • SUDEP is as common in children as it is in adults.
  • Most SUDEP cases are associated with a seizure having occurred.
  • No one knows with certainty the cause of death in SUDEP and it may differ between cases.
  • SUDEP risk changes over time.


Learn more about SUDEP:
There are a few primary causes of SUDEP "under investigation" by researchers in the epilepsy community.

Some potential causes...
  • Heart Function - A person’s heartbeat can also play a role. Dangerous heart rhythms or cardiac arrest can occur as the result of a seizure.
  • Breathing - Seizures can cause a person to have pauses in breathing, known as apnea, which may extend to life-threatening lengths of time without oxygen. Low oxygen and high carbon dioxide levels can can contribute to changes in heart rhythms and blood pressure
  • Brain Function - Brain waves can decrease or flatten in the post seizure period. This EEG characteristic has been seen in SUDEP cases happening during monitoring in an Epilepsy center.


Our understanding of SUDEP and how it happens grows every day. Talking to your doctor and exploring related research going on may help alleviate any anxiety you may have.

Learn more about SUDEP:



SUDEP RISK FACTORS
While there is still a lot to be learned about SUDEP, certain risk factors make individuals with epilepsy more prone to SUDEP. It’s important to know what these risk factors are in order to minimize your risk.

SUDEP risk factors include...

  • Uncontrolled seizures
  • Generlized Tonic-Clonic seizures
  • Nighttime seizures or seizures while sleeping
  • Prolonged seizures


What does SUDEP risk look like in people using Seizure Tracker?


People using seizure diaries to help manage their epilepsy are typically experiencing hard to controll seizures. The charts below represent the measurable risk factors collected by Seizure Tracker users and the risk prevalence.
While anyone with epilepsy who experiences convulsive seizures can be at risk, the most significant risk factor is how often you have generalized tonic-clonic seizures. Your Seizure Tracker diary can help you record the frequency and type of seizures. The chart below represents seizures recorded in the Seizure Tracker system by type.
Seizure length can also play a role in SUDEP risk. The longer the seizure, the higher the risk. Most GTC seizures in the Seizure Tracker population are under four minutes. (See chart below.) When individuals start to see GTC seizures lasting over four minutes, risk goes up significantly.
People experiencing nocturnal seizures have a higher risk of SUDEP. Nighttime monitoring and creating a safe sleeping environment are two ways to reduce risk of injury and SUDEP as a result of a nocturnal seizure.


Risk

LOWER YOUR RISK

Not all risks can be mitigated, but educating yourself on the risk factors does help ensure you are doing everything you can. Sometimes learning what lifestyle habits may be contributing to seizures can make a big difference. The bottom line is, less seizures means less risk. Using Seizure Tracker to help you track medications and lifestyle habits can help!
Exploring these ways to lower your risk of seizures is a great place to start:

  • Take your medications consistently and exactly as they’re prescribed by your doctor. (Note: If you’re having problems with side effects or think your medications aren’t working, talk to your doctor before changing anything.)
  • Learn what lifestyle changes could affect your seizure activity. Use Seizure Tracker to help you identify what may be triggers for your seizures, such as a lack of sleep or alcohol use. Then you can avoid these triggers as much as possible.
  • While the volume of convulsive seizures is the biggest risk factor for SUDEP, low risk does not equal no risk. Everyone who experiences seizures should work with their provider to actively take steps to minimize the risk of sudden death. 
  • Breathable or anti-suffocation pillows can help prevent suffocation-related accidents.
  • Use Seizure Tracker to accurately record your seizures and learn from your own data.



TALK TO YOUR DOCTOR
Talk to Doctor

Talking with your doctor can help!

It’s important to talk to your doctor about SUDEP, how to prevent it, and what treatment options are available to you.

These questions can help you jumpstart your conversation:

  • What is my risk for SUDEP?
  • What can I do to decrease my risk?
  • If I have nocturnal seizures, how can I make sure that I’m staying safe at night and getting the care I need during and after a seizure?
  • What do I do if I forget to take my anti-seizure medication?
  • Can my family and friends help? How?
  • What resources do you know of for SUDEP prevention?
  • How often should we review my SUDEP risk?

Note: It may make sense to let you doctor know you would like to talk about SUDEP prior to or at the beginning of your appointment. This is an important conversation. You and your doctor need to allocate the appropriate preparation and time needed.

Get a printable version of these questions to take to your doctor.
 Get PDF

Have you or a family member been impacted by SUDEP?

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ADDITIONAL RESOURCES:
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Danny Did (Technology suggestions and financial support)
Chelsea Hutchison Foundation (Financial support)
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Bed Monitor
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Pulse-Ox Monitor Ring
Pillow and Mattress Topper
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Partners Against Mortality in Epilepsy (PAME)
Child Neurology Foundation (CNF)
SUDEP Aware
Epilepsy Foundation (USA)
SUDEP Action (UK)
Citizen's United for Research in Epilepsy (CURE)
North American SUDEP Registry
Sudden Death in the Young Registry
Canadian Paediatric Surveillance Program
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