Understanding SUDEP
What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy. In cases of SUDEP, a person with epilepsy dies without warning, and no cause of death can be found. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. Among those with poorly controlled seizures, more than 1 in 150 people with epilepsy die from SUDEP each year. 


What causes SUDEP?

The cause of SUDEP is unknown. It usually occurs during sleep, and this makes it hard to know exactly what happened. There is often, but not always, evidence of a seizure before death. Research has shown that problems with breathing, heart rhythm, or brain function may be involved. There may also be genetic factors that increase the risk of SUDEP.


Who is at risk for SUDEP?

The biggest risk factor for SUDEP is frequent generalized tonic-clonic (grand mal) seizures. Other risk factors may include the following:

  • Epilepsy beginning at an early age
     
  • Having epilepsy for a long time
     
  • Not taking medications regularly or as prescribed
     
  • Stopping or changing medications suddenly
     
  • Young adult age (20-40 years old)
     
  • Intellectual disability (IQ<70)


What can I do to reduce the risk of SUDEP?

The best way to reduce the risk of SUDEP is to have as few seizures as possible. The following tips can help you get the best possible seizure control:

  • Take your medications as prescribed.
     
  • Identify and avoid seizure triggers (such as stress, lack of sleep, alcohol, etc.).
     
  • If your seizures are not fully controlled, see an epileptologist at a Comprehensive Epilepsy Center to explore other treatment options.

The following strategies may help, but there is not enough evidence to show that they can prevent SUDEP:

  • monitoring and alert devices - there are many new devices that can monitor movement, breathing, heart rate, and other functions, and some can alert you if there is a potentially dangerous change; such devices may allow you to intervene if a seizure is detected
     
  • sleeping with someone else - someone else in the room may awaken to seizure-related sounds or movement and may be able to respond
     
  • other safety precautions - SUDEP is not the only epilepsy-related cause of death; safety precautions related to the home, the workplace, driving, bathing/showering, and recreational activities can help to reduce the risk of injury or death



If you or a loved one has epilepsy, please talk to your neurologist about SUDEP and what you can do to reduce your risk. 



Additional Resources


Printable SUDEP Infographic 


Please contact us at Epilepsy Foundation of Michigan if you'd like additional information or support (800-377-6226).