Sudden Unexpected Death in Epilepsy (SUDEP)
For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to such deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1
It is likely that most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not fully known or understood, but theories exist as to why SUDEP occurs.1-4
- 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. Rarely, a seizure may cause a dangerous heart rhythm or even 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.
Estimates of SUDEP risk vary, but general population studies suggests that each year there is about 1 case of SUDEP for every 1,000 people with epilepsy.2 For some, this risk can be considerably higher, depending on several factors identified by researchers such as:
- Uncontrolled or frequent seizures.1
- Generalized convulsive (tonic-clonic or “grand mal”) seizures.1
Other possible risk factors may include the following:
- Long duration of epilepsy and young age when seizures started.2
- Not taking antiepileptic medication regularly as prescribed.4
- Alcohol use.1
If you have epilepsy, ask your doctor to discuss your risk of SUDEP with you. The first and most important step to reduce your risk of SUDEP is to regularly take your seizure medication as prescribed. If you are taking seizure medication and are still having seizures, discuss options for adjusting the medication with your doctor. If seizures continue, consider consulting an epilepsy specialist, if you are not already seeing a specialist. Other possible steps to reduce the risk of SUDEP might include:
- Avoid seizure triggers, if these are known.2 Read more information about seizure triggers.
- Avoid excessive alcohol use.1
- Avoid sleep deprivation.1
If you have uncontrolled epilepsy, talk with your doctor about other possible ways to reduce your risk of SUDEP. If necessary, other ways to reduce risk might include having adults in the household trained in first aid for epilepsy seizures.
When you decide to talk with your doctor about SUDEP, possible questions to ask the following:
- What is my risk for SUDEP?
- If my risk of SUDEP is increased, what can I do to reduce my risk?
- What should I do if I forget to take my anti-epileptic drug (AED)?
- What steps should I take if it is decided to change my seizure medication?
- What medications provide the best seizure control for me?
- Are there any specific activities I should avoid?
- What instructions should I give my family and friends if I have a seizure?
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Please visit the following Web sites for more information and resources related to SUDEP:
- Epilepsy Foundation
- Partners Against Epilepsy in Mortality
- Citizens United for Research in Epilepsy (CURE)
- SUDEP Aware
- Epilepsy Bereaved (United Kingdom)
- Patient UK (United Kingdom)
- Support Groups
- Power Point Presentation
- SUDEP Brochures
- SUDEP Information for a Person Living with Epilepsy
- SUDEP Information for Parents of Children with Epilepsy
- SUDEP Information for Spouses or Partners of People with Epilepsy
- Devinsky O. Sudden unexpected death in epilepsy. New Engl J Med. 2011;365:1801-11.
- 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.