top of page

SUDEP

What is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP), which occurs when a seemingly healthy person with epilepsy dies for no known obvious reason, is perhaps the most devastating possible consequence of epilepsy. It is estimated that over 3,000 people will die each year from SUDEP and it can happen to anyone with epilepsy, although certain individuals are at a greater risk. While certain steps can be taken to reduce this risk, there is a critical need for continued SUDEP research to understand the underlying biological mechanisms in order to prevent SUDEP.

​

What Causes SUDEP? 

No one knows what causes SUDEP, but many areas are being looked at. SUDEP occurs most often at night or during sleep when the death is not witnessed, leaving many questions unanswered. There may be evidence that a person had a seizure before dying, but this isn’t always the case. Current research into the possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain function that occur with a seizure.

​

  • Breathing: A seizure typically may cause a person to briefly stop breathing (apnea). If these breathing pauses last too long, they can reduce the amount of oxygen that gets to the heart and the brain. A lack of oxygen can be life threatening if not treated immediately. Also, a person’s airway may sometimes get blocked during a convulsive seizure, leading to suffocation (inability to breathe).

  • Heart Rhythm: Rarely, a seizure may cause a dangerous heart rhythm or cardiac arrest.

  • Brain Function Seizures may suppress or interfere with the function of vital areas in the brainstem. These areas are responsible for breathing and heart rate as well as other important body functions. As a result, changes in brain function could cause dangerous breathing and heart rate changes.

  • Others: SUDEP may result from more than one cause, or from a combination of breathing difficulty, abnormal heart rhythm and changes in brain function. Or, it may result from factors researchers have yet to discover.

Who is at Risk for SUDEP?

While SUDEP can happen to anyone with epilepsy, some people are at higher risk than others. The greatest common risk factor for SUDEP is having more than three generalized tonic-clonic seizures per year (DeGiorgio et al., 2017). Other top risk factors include:

 

  • Generalized tonic-clonic seizures

  • Not taking medications as prescribed

  • Early age of epilepsy onset

  • Uncontrolled or frequent seizures

​

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. For example, avoiding seizure triggers and working with and 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: 

Learn how to get the best care and decrease your risk for SUDEP.

​

SUDEP and Epilepsy Mortalities Information and Services:

 

Position Statements and Guidelines:

 

General Grief Support:

​

ORGANIZATIONS PROVIDING EDUCATION ON SUDEP:

Epilepsy Foundation of America

www.epilepsy.com/programs/sudep-program

The Epilepsy Foundation’s SUDEP program works to prevent SUDEP and support people bereaved by SUDEP and other epilepsy-related deaths.

 

CURE Epilepsy

www.cureepilepsy.org/signature_programs/sudep-sudden-unexpected-death-in-epilepsy-overview/

CURE Epilepsy’s mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy, with the assistance of many parents who were seeking answers, launched the first-ever private research program dedicated to advance the understanding SUDEP and its prevention in the US. Since pioneering the first SUDEP research nearly 20 years ago, CURE Epilepsy has funded 38 grants for a total of $5.3M.

 

Partners Against Mortality in Epilepsy

pameonline.org/past-webinars/

PAME’s recorded webinars cover a variety of topics including common SUDEP misconceptions, managing grief, and talking about SUDEP.

​

bottom of page