For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to unexpected deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1
Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.2
Most cases of SUDEP happen during or just after a seizure. The exact cause is not known, but these are possible reasons:1,3-6
- Breathing. A seizure may cause a person to have pauses in breathing (apnea). If these pauses last too long, the seizures can lower the oxygen in the blood to a dangerous level. Also, during a convulsive seizure a person’s airway sometimes may get covered or blocked, so they are unable to breathe.
- Heart rhythm. Rarely, a seizure may cause a dangerous heart rhythm or even heart failure.
- Other causes and mixed causes. SUDEP may result from more than one cause or a combination involving both breathing difficulty and abnormal heart rhythm.
Risk factors for SUDEP
The main risk factors for SUDEP are
- Uncontrolled or frequent seizures.1
- Generalized convulsive (also called tonic-clonic or grand mal) seizures.1
Other possible risk factors include
- Seizures that begin at a young age.3
- Many years of living with epilepsy.3
- Missed doses of medicine.5
- Drinking alcohol.1
Steps to reduce the risk of SUDEP
The first and most important step to lower the risk of SUDEP is to regularly take seizure medication as prescribed. If seizure medications are not controlling seizures, discuss options for adjusting the medication with your doctor. If seizures continue, consider seeing an epilepsy specialist.
Other possible steps to reduce the risk of SUDEP are
- Avoid seizure triggers (such as stress).3
- Do not drink too much alcohol.1
- Get enough sleep.1
For more information about SUDEP
Please visit the following Web sites for more information and resources related to SUDEP:
Epilepsy Foundation SUDEP Institute
Citizens United for Research in Epilepsy (CURE )
CDC Epilepsy Program
Partners Against Mortality in Epilepsy (PAME)
- Devinsky O. Sudden unexpected death in epilepsy. New Engl J Med. 2011;365:1801-11.
- Thurman DJ, Hesdorffer DC, French JA. (2014). Sudden unexpected death in epilepsy: Assessing the public health burden. Epilepsia. 55(10):1479-85.
- Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-31.
- So EL. What is known about the mechanisms underlying SUDEP? Epilepsia. 2008;49(Suppl. 9):93–98.
- Nei M, Hays R. Sudden unexpected death in epilepsy. Curr Neurol Neurosci Rep. 2010;10(4):319-26.
- Devinsky O, Spruill T, Thurman D et al. (2015). Recognizing and preventing epilepsy-related mortality: A call for action. Neurology published online December 16, 2015 . doi: 10.1212/WNL.0000000000002253