Sudden Unexpected Death in Epilepsy (SUDEP)

SUDEP stands for “sudden unexpected death in epilepsy.” It describes the unexpected death of a person with epilepsy who was otherwise in good health. Injury, drowning or other known causes didn’t lead to the death in this situation. Rather, no other cause of death is found if an autopsy is performed.

SUDEP is the leading cause of death in people with uncontrolled seizures.

In more than one-third of SUDEP cases, there were signs of a seizure close to the time of death. The person is often found lying face down in bed, but the cause of death is unknown. Some researchers believe a seizure — which causes SUDEP — may affect either the cardiac (heart) or respiratory (lung) centers in the brain.

SUDEP is a scary thing to think about. It’s rare, but it does happen. If you or a loved one has epilepsy, be sure to talk to your healthcare provider about your risk of this condition.

SUDEP causes

Researchers don’t know exactly what causes SUDEP, but there are many theories. The condition happens most often at night or during sleep when no one witnesses the death. That leaves many questions and few answers. There’s sometimes evidence that a person had a seizure before dying. But that’s not always the case.

Possible causes of SUDEP include issues with breathing, heart rhythm and brain function that occur with a seizure:

• Breathing: A seizure can cause you to briefly stop breathing (apnea). If apnea lasts too long, it can reduce the amount of oxygen that gets to your brain and heart. A lack of oxygen can be life-threatening if you don’t get immediate treatment. Also, your airway may get blocked during a seizure, leading to suffocation.
• Heart rhythm: A seizure may cause a dangerous heart rhythm or cardiac arrest.
• Brain function: A seizure may interfere with or suppress the function of important areas in your brainstem. These areas are in charge of heart rate and breathing, as well as other vital bodily functions. Because of this, brain function changes could lead to dangerous heart rate and breathing changes.

SUDEP may happen due to more than one reason. It may happen from a combination of breathing issues, abnormal heart rhythm and brain function changes. It could also result from other factors that scientists haven’t discovered yet.

Risk factors

The risk for SUDEP in adults and children with epilepsy is small. Researchers don’t know why the condition happens. Experts have tried to come up with a list of possible risk factors that may increase your chance of SUDEP. If you or your loved one has epilepsy and you’ve had any of the following recently, make sure to talk to your healthcare provider about your risk.

The greatest risk factor for SUDEP is having generalized convulsive seizures, especially at night. These are also called tonic-clonic or grand mal seizures.

Other risk factors include:

• Having frequent or uncontrolled seizures
• Having other types of seizures at night
• Not taking your antiseizure medications as recommended by your provider
• Having drug-resistant epilepsy (when seizures continue to occur even after you’ve tried two or more antiseizure medications)
• Having alcohol use disorder or substance use disorder
• Living alone
• Having an intellectual disability

How doctors diagnose SUDEP

The definition of SUDEP is the sudden and unexpected death of a person with epilepsy for which no apparent alternative cause has been found. So, to make a diagnosis of SUDEP, other possible causes of death need to be ruled out.

The diagnosis is based on a person’s history and examination findings after their death.

How can the risk of SUDEP be reduced?

SUDEP is one of the most feared complications of epilepsy. So, managing your risk is vital. If you have epilepsy, it’s important to discuss your specific risk factors for SUDEP with your healthcare provider. Ways to reduce your risk include:

• Managing seizures better: Seizure freedom, especially from convulsive seizures, is associated with significantly lower risk.
• Monitoring for seizures: Detect seizures through observation and seizure-monitoring devices like alarms and bed sensors.
• Finding the right sleep position: Sleep on your back or side.
• Taking care of heart health: Get assessment and treatment of any cardiac rhythm disturbances that may occur during a seizure.

When should I see my healthcare provider?

If you have any type of epilepsy, you should see your healthcare provider regularly. This is especially true if you have unmanaged seizures. Talk to your provider about ways to manage your seizures and lower your risk of SUDEP.

How can you prevent SUDEP?

The best way to prevent SUDEP is by managing your seizures. You can do this by:

• Taking your medication: Make sure to take your medication regularly and at the prescribed dose.
• Visiting your healthcare provider: Get frequent check-ups, especially if you have unmanaged seizures.
• Considering other treatment options: If medication doesn’t work, consider epilepsy surgery, special devices and dietary therapy.
• Using rescue antiseizure medications: For prolonged seizures or clusters of seizures, use rescue medication.
• Taking good care of yourself: Eat well, get enough sleep and get regular physical activity.
• Avoiding certain substances: Avoid drinking alcohol or using recreational drugs.
• Reducing stress: Try to reduce your stress level.
• Being aware of and avoiding any potential seizure triggers when possible: You should keep a record of things that happened before a seizure (like stress, illness or fatigue) and when and where you were when the seizure occurred.
• Talking to your provider about your heart: Have your heart checked (cardiac evaluation) to rule out any heart issues.
• Being seizure-safe: Make sure your friends and loved ones know what to do if you have a seizure.
• Training caregivers in basic life support: When you find someone who isn’t breathing while in or after a seizure, ensure close monitoring and stimulation.