Sudden Unexpected Death in Epilepsy (SUDEP)

Sudden unexpected death in epilepsy (SUDEP) refers to when an otherwise healthy person with epilepsy dies unexpectedly. While the exact cause of SUDEP is not clear, you can reduce your risk with proper care.

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Sudden unexpected death in epilepsy (SUDEP) refers to when an otherwise healthy person with epilepsy dies unexpectedly. It happens without warning and no cause of death is found.

Most people with epilepsy can live long, healthy lives, but the risk of unexpected death is still a major concern. While is the leading cause of death for young adults with uncontrolled seizures, SUDEP is rare. Each year, it is estimated that 1 out of 1,000 U.S. adults with epilepsy die from SUDEP.

University of Iowa Health Care neurology and neurosurgery specialists are experts in the diagnosis, treatment, and management of epilepsy and can design a treatment plan for you that helps you reduce your risk of SUDEP.

What sets us apart

Neurologists and neurosurgeons at UI Health Care are nationally recognized for their expertise on SUDEP. We are only of only a handful of medical centers to collaborate with the Center for SUDEP Research and the National Institutes of Health to help pinpoint the causes of SUDEP and stop it from happening.

We’re also the first and only health system in Iowa accredited as a Level 4 epilepsy center by the National Association of Epilepsy Centers (NAEC). This is the highest designation an epilepsy center can achieve.

Causes of SUDEP

A key risk factor for SUDEP is epilepsy which is not well controlled by treatments like medication or surgery. While the exact cause of SUDEP is unknown, increasing evidence suggests that loss of breathing, or apnea, that persists after a seizure is a major cause of SUDEP.

In fact, UI Health Care neuroscientists have found that when a seizure spreads to a specific brain area, it causes prolonged loss of breathing even after a seizure has ended.

Most SUDEP deaths occur from experiencing a seizure while sleeping. These seizures can cause complications such as:

Heart problems

In rare instances, a seizure can lead to a change in heart rate or rhythm, or even trigger a heart attack.

Breathing problems

Seizures can cause a person to stop breathing for a small amount of time. If these pauses last too long, it can cause a life-threatening lack of oxygen. It can also lead to suffocation if the airway is blocked during the seizure.

SUDEP can also result from a combination of these issues as well as in combination with other existing medication conditions or genetic disorders.

Who is at risk of SUDEP?

Anyone who has epilepsy has a risk of SUDEP. However, there are factors that increase your risk, such as:

Frequent, tonic-clonic (grand mal) seizures
Not taking medications as prescribed
A history of seizures at night
Being 20 to 40 years of age

Higher risk is also associated with those found to have epilepsy in their youth and who have had it for a long time.

Reducing your risk of SUDEP

The best way to reduce your risk of SUDEP is to work with your care team to control your seizures. This could include:

Following your treatment plan

This means you are taking seizure medication as prescribed, attending regular appointments with your provider, and possibly opting for advanced treatment options, such as surgery, neurostimulation devices, clinical trials, or dietary therapy.

Making lifestyle changes

Eating better, getting enough rest, minimizing stress, and avoiding alcohol and recreational drugs can all help to improve overall health and reduce seizures.

Knowing and avoiding your seizure triggers

Keep notes about what occurred before a seizure. This could help you better understand what triggers your seizures, so you can plan to avoid those triggers as much as possible.