Sudden Unexpected Death in Epilepsy (SUDEP) Information

What is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found.₁

Each year, more than 1 in 1,000 people with epilepsy die from SUDEP.

How does SUDEP occur?

Most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but these are possible factors:

Breathing. A seizure may cause a person to have pauses in breathing (apnea). If these pauses last too long, they can reduce the oxygen in the blood to a life-threatening level. In addition, during a convulsive seizure a person’s airway sometimes may get covered or obstructed, leading to suffocation.
Heart rhythm. A seizure may cause a dangerous heart rhythm or cardiac arrest.
Other causes and mixed causes. SUDEP may result from more than one cause or a combination involving both breathing difficulty and abnormal heart rhythm.₂

What are the risk factors?

The main risk factors for SUDEP are:

Uncontrolled or frequent seizures
Generalized convulsive (also called tonic-clonic or grand mal) seizures

Other possible risk factors may include:

Seizures that begin at a young age.
Many years of living with epilepsy.
Missed doses of medicine.
Drinking alcohol.₂

How do I minimize the risk for SUDEP?

It is important to take seizure medication as prescribed. If you continue to have seizures speak with your doctor about adjusting your medication and other possible treatment options. Consider seeing an Epilepsy specialist if you are not already.

Other possible steps to reduce the risk of SUDEP may include:

Avoid seizure triggers.
Avoid drinking too much alcohol.
Learn how to better control your seizures with epilepsy self-management programs.
Get enough sleep.
Train adults in the house in seizure first aid.₂

SUDEP Resources

North American SUDEP Registry (NASR)

Documents and analyzes cases of SUDEP to illuminate risk factors and causes and develop preventative measures. Promotes SUDEP awareness by aiming to provide epileptic patients and their families with the information and tools necessary to make informed decisions.

CDC - Centers for Disease control & prevention

The CDC is a Federal Agency that offers information on a large range of diseases. Their SUDEP page has additional SUDEP information.

Danny Did Foundation

Learn more about this family's mission to prevent deaths caused by seizures

Online Bereavement Support Group

This closed online community is a great resource for bereaved families to connect with and support one another.

SUDEP Action

SUDEP Action (formerly Epilepsy Bereaved)is committed to preventing Sudden Unexpected Death in Epilepsy and other epilepsy deaths through research, awareness and influencing change.

SUDEP Institute

The SUDEP Institute is a project led by the Epilepsy Foundation in collaboration with CURE, SUDEP Aware, Danny Did Foundation, AES and other leading epilepsy organizations and experts. Our mission is to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting SUDEP.

References

1. Epilepsy Foundation of America, November 12, 2019, SUDEP FAQ, September 17, 2020, [https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-faq]
2. Centers for Disease Control and Prevention, May 17, 2018, Sudden Unexpected Death in Epilepsy (SUDEP), September 17, 2020, [https://www.cdc.gov/epilepsy/about/sudep/index.htm]