Learning About Sudden Unexpected Death in Epilepsy (SUDEP)

Sudden unexplained death in epilepsy (SUDEP) is the death of a person with epilepsy that happens suddenly and with no warning. With SUDEP, no other cause of death can be found. This includes injury, drowning, or prolonged seizure (status epilepticus).

Doctors are not sure what causes SUDEP. It may be caused by problems with breathing, the heart, and the brain after a person has a seizure. It most often happens with an epileptic seizure, especially with a generalized tonic-clonic (GTC) seizure. It’s also more likely to happen during sleep after a seizure. In some cases, it occurs without any signs of a seizure.

A risk factor is anything that increases a person’s chance of having a health problem. Things that may increase your risk for SUDEP include:

• Having frequent, uncontrolled generalized tonic-clonic (GTC) seizures.
• Having GTC seizures during sleep.
• Being biologically male.
• Being young when you had your first seizure.
• Having epilepsy for a long time.
• Missing doses of seizure medicine.
• Using alcohol, drugs, or both.
• Sleeping on your stomach (the prone position).

SUDEP is not that common. It affects about 1 out of 1,000 people with epilepsy each year. So there is only a small risk of SUDEP for people with epilepsy.

Here are some things that can help lower your risk for SUDEP:

• Take your medicines exactly as prescribed. Contact your doctor if you think you are having a problem with your medicine.
• If your medicines are not working to prevent seizures, tell your doctor. The doctor can adjust your medicines. Your doctor may also discuss surgery.
• Make changes in your daily life to help control seizures, if needed. This includes getting enough sleep and finding ways to lower stress. Also, do not use alcohol or drugs. And don’t skip meals.
• Ask friends and family to learn about SUDEP. Also, create a seizure first-aid plan with your friends and family. The plan will help them know how to help you.
• Consider using a device that can detect seizures when you sleep. For example, you could wear a special watch with a sensor. Or you could place a sensor under your mattress. These devices can send an alert to a family member or friend.
• Try to sleep on your side or your back, not on your stomach. If you have seizures at night, it helps to have someone sleep in the same room to check on you.