SUDEP, or Sudden Unexpected Death in Epilepsy, refers to the death of a person with epilepsy that is not caused by injury, drowning or other known causes. Current studies show that about 1.16 out of 1,000 people with epilepsy die each year from SUDEP. That frequency is believed to increase among people whose epilepsy is not controlled by medication or another form of treatment, a circumstance known as refractory epilepsy.
Why? The exact causes of SUDEP are not fully known. Research shows that breathing, heart rate or brain function complications that occur during or after a seizure may contribute. There may not be the same mechanisms of death for each person who is victim to SUDEP; there is still much to learn.
What are the risks? While SUDEP is not a regular phenomenon, all people with epilepsy do face this risk. The main risks for SUDEP are:
- Uncontrolled or frequent seizures
- Generalized convulsive (also called tonic-clonic or grand mal) seizures
- Seizures that occur during sleep
- Seizures that begin at a young age
- Many years of living with epilepsy
- Missed doses of medicine or abruptly stopping medicine use
How can risk be reduced? Here are steps to take to reduce risk and links to important resources:
- Take medicine regularly and as prescribed
- Learn how to better control your seizures with epilepsy self-management programs
- Avoid seizure triggers if these are known
- Consider the use of a seizure monitor or device to enable intervention after a seizure
- Ask these questions of your health care provider
- Train adults in the house in seizure first aid
- Download this Infographic
- Become an advocate for further SUDEP research