Sudden Unexpected Death in Epilepsy (SUDEP) is a non-accidental death in a person with epilepsy, who was otherwise in a usual state of health. On autopsy, no other of cause of death can be found. The death should not be due to status epilepticus, which is a prolonged life-threatening seizure episode.
The rate of SUDEP is approximately one death per 1,000 people with epilepsy per year. However, in people with frequent epileptic seizures that are poorly controlled with medications, the rate is approximately 1 in 150 per year. Furthermore, SUDEP is the leading cause of death in young people with uncontrolled epilepsy. People with only absence or myoclonic seizures are not known to have increased risk for sudden death.
No one knows what causes SUDEP. It is unlikely that a single cause will explain all SUDEP deaths. Most cases occur at night or during sleep and are not witnessed, leaving many questions unanswered. There is often but not always evidence of a seizure before death. Whereas a seizure is not a requirement for SUDEP to be diagnosed, studies suggest the deaths are likely seizure-related.
Current research into the possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain function that occur with a seizure.
Breathing: A seizure may cause a person to briefly stop breathing (apnea). If these pauses last too long, they can reduce the oxygen delivery to the heart and the brain, and they may be life-threatening. In addition, a person's airway may sometimes become obstructed during a convulsive seizure, leading to suffocation.
Heart Rhythm: Rarely, a seizure may cause a dangerous heart rhythm or cardiac arrest.
Brain Function: Seizures may suppress the function of vital brainstem centers, so that respiration and heart rate may temporarily malfunction..
Others: SUDEP may result from more than one cause, or from a combination of breathing difficulty, abnormal heart rhythm and suppressed brain function. Or, it may result from factors researchers have yet to discover.
The greatest risk factor for SUDEP is frequent seizures, especially generalized tonic-clonic (grand mal) seizures.
Other risk factors being investigated include:
Early age of epilepsy onset or long duration of epilepsy
Not taking medications as prescribed
Stopping or changing medications abruptly
Young adult age (20-40 years old)
Intellectual disability (IQ<70)
Some studies have shown that greater number of seizure medications is associated with a higher risk for SUDEP. However, taking multiple medications often indicates severe epilepsy requiring more aggressive treatment. Studies that have taken seizure frequency into account have not found an increased risk of SUDEP attributed to a multi-drug regimen alone.
As with adults, the answer depends on how severe the epilepsy is. However, the risks are in general much lower in children than in adults.
The best way to prevent SUDEP is to have as few seizures as possible.
Maximize seizure control. Take medication as prescribed. Visit a doctor regularly, especially if seizures are not controlled. If medicines do not work, consider other therapies such as epilepsy surgery, vagus nerve stimulation, and the ketogenic diet.
Eat well, get enough rest and regular exercise, avoid drinking too much alcohol or using recreational drugs, and minimize stress when possible.
Be aware of and avoid any potential seizure triggers. Keep a record of things that occurred before a seizure (such as illness, tiredness, stress, missing medications, and where and when the seizure occurred).
People with uncontrolled epilepsy in whom there is no evidence on MRI of a structural cause or on EEG of epilepsy waves should talk to their doctor about a cardiac evaluation to rule out any pre-existing heart condition.
Be seizure safe. Make sure family and co-workers have knowledge of seizure first-aid, take extra precautions around water, including swimming and bathing.
There is often but not always evidence of a seizure before death. Whereas a seizure is not a requirement for SUDEP diagnosis, recent studies suggest most SUDEP are likely seizure-related.
There are some studies that suggest genetic factors may play a role, but no definite information is available at this time. Several research efforts are looking into genetics and SUDEP.
Yes! If your doctor has not spoken to you about the health risks associated with epilepsy including SUDEP, ask about SUDEP at the first opportunity.. Questions to ask include: What risks do I/my family member have for SUDEP? What can we do to reduce the risk of SUDEP?
There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.
Nocturnal supervision, especially from someone who is able to provide assistance, such as repositioning or basic first aid after a seizure, may be a strategy to limit SUDEP. However this is often not practical or desired, and more scientific evidence is needed to prove that it is effective in preventing SUDEP. Several devices are being developed to detect seizures and alert caregivers about seizure occurrence. However, they may not alert you that your loved one has stopped breathing. Whether these devices can prevent SUDEP remains unknown.
If you have recently lost a loved one to SUDEP, contact the North American SUDEP Registry (NASR) and participate in their study to help discover the causes of SUDEP. The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study. For more information call 855-432-8555 or email firstname.lastname@example.org; or contact Dr. Devinsky at 646-558-0801 or email email@example.com.
The Ion Channels in Epilepsy study at Baylor College of Medicine is also accepting participants. The aim of the study is to identify genetic risk factors that predispose persons to epilepsy and to sudden death. If you would like to learn more about this study, or participate, please call Dr. Goldman at 713-798-0980 or email firstname.lastname@example.org.
Contact your local Epilepsy Foundation affiliate or any of the organizations with websites listed below.
Devinsky, O Sudden, Unexpected Death in Epilepsy, New England Journal of Medicine, 2011; 365:1801-1811.
Friedman D, Hirsh L Sudden Unexpected Death in Epilepsy – An Overview of Current Understanding and Future Perspectives. European Neurological Review, 2012;7(1):67-71.
Hesdorffer, D., T. Tomson, et al. (2011). "Combined analysis of risk factors for SUDEP." Epilepsia 52: 1150-1159.
Leestma JE, Annegers JF, Brodie MJ, et al. Sudden unexplained death in epilepsy: observations from a large clinical development program. Epilepsia 1997; 38: 47-55.
Nashef L, Sudden unexpected death in epilepsy; terminology and definitions, Epilepsia, 1997;38(11 Suppl.):S6-8.
Torbjörn T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. The Lancet, 2008, Volume 7: 1021-1031.
Surges R, Thijs R, Tan H, Sander J. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. www.nature.com/neurology September 2009, Volume 5: 492-504.
by Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute
Last Reviewed: 5/20/2013
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