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What Is Sudden Unexpected Death in Epilepsy (SUDEP)?

What You Should Know About SUDEP

Managing epilepsy is key to maximizing your quality of life. While there are many risk factors to keep in mind, it’s important to know about sudden unexpected death in epilepsy (SUDEP).

SUDEP refers to the sudden and unexpected death of a person with epilepsy. In cases of SUDEP, no other cause of death is found and the death is directly related to the seizure disorder itself.

SUDEP is rare; it’s seen in just one in a thousand patients with epilepsy per year. But it is the most common cause of death related to epilepsy and affects particular patients with uncontrolled convulsions.

“Most people with epilepsy lead full and fulfilling lives,” says Stephan U. Schuele, MD, an epileptologist at Northwestern Medicine. “However, it is important to discuss SUDEP with your seizure specialist. Regular visits with your neurologist will ensure that you receive the best care, information and support for your individual situation.”

The Cause of SUDEP Is Not Fully Understood

Experts believe SUDEP may involve a combination of factors, including:

  • Convulsive seizures that affect your ability to breathe or that disturb the heart's rhythm
  • Laying in a prone position (on your stomach) after the seizure
  • Seizures with nobody around to help you wake up and breathe

SUDEP Risk Factors

Not everyone with epilepsy is at the same risk of experiencing SUDEP. The main risk factors associated with SUDEP include:

  • Uncontrolled convulsive seizures
  • Not taking prescribed antiepileptic medication as directed

It is important to understand these potential risks and discuss them with your seizure specialist. 

Ways to Reduce Your Risk of SUDEP

Managing your epilepsy is the best way to reduce your risk of SUDEP. This includes:

  • Strive for optimal seizure control.
    • Take prescribed antiepileptic medications as directed by your care team to help manage seizures.
    • Follow up with your epilepsy specialist consistently to monitor the effectiveness of treatment and adjust medication dosages if needed.
  • Talk to your physician about epilepsy surgery and if it’s something you should consider. A recent study  links epilepsy surgery with lowering the risk of SUDEP.
  • Maintain a healthy lifestyle, including:
    • Getting enough sleep
    • Managing stress
    • Avoiding triggers that may provoke seizures
    • Avoiding alcohol and drug use, as they can increase the likelihood of seizures
  • Wear a seizure-detection device that can alert caregivers or emergency services if you have a seizure. These devices can help you get early intervention and timely medical assistance.
  • Get care from a multidisciplinary team at a National Association of Epilepsy (NAEC)-designated epilepsy center, which includes epilepsy specialists, neurosurgeons, psychiatrists, psychologists and social workers, as well as specialized nurses and EEG technicians who all are committed to providing excellent care for patients with seizures.

“Talking with your epileptologist about SUDEP helps increase your awareness and understanding of the condition,” says Dr. Schuele. “They can provide you with accurate information about the risk factors, potential warning signs and preventive measures associated with SUDEP. This knowledge empowers you to make informed decisions about your epilepsy management.”