What is SUDEP?
A death is referred to as “SUDEP” when a seemingly healthy person with epilepsy dies unexpectedly and no reason for the death can be found.
What Causes SUDEP?
Irregularities in the heart rhythm, breathing disfunction, disturbances in brain circulation and seizure induced hormone and metabolic changes have all
been suggested as potential causes of SUDEP. Recently, the first potential gene for SUDEP has been identified that controls the normal rhythm of the heart.(goldman et al, 2009)
How is SUDEP determined?
A death is referred to as a ‘SUDEP’ when a seemingly healthy person with epilepsy dies unexpectedly and no reason for the death can be found. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are (Leestma, et al 1997):
How often does SUDEP occur?
Although there have been no large scale studies of SUDEP in the U.S., data are available from a variety of sources. The most important thing to remember is that the incidence of SUDEP differs greatly depending upon the population studied.
Elson So, M.D., Professor of Neurology and Chair of Electroencephalography at Mayo Clinic College of Medicine in Rochester, Minnesota and past chair of the Joint SUDEP Task Force of the American Epilepsy Society and the Epilepsy Foundation states “for a person with epilepsy, in general, the risk is small, at one in 3,000 persons over a one-year period. For a person with poorly controlled seizures, especially generalized convulsions, the risk is one in 100 persons over one year. Persons with absence or myoclonic seizures are not known to have increased risk for SUDEP.”
Who is at risk for SUDEP?
While SUDEP can happen to anyone with epilepsy, some people are at higher risk than others (Torbjörn, et al 2008).
Risk factors most consistently associated with SUDEP are:
Other risk factors include:
How often does SUDEP occur in children with epilepsy?
As with adults, the answer depends on how severe the epilepsy is. In general, however, risks are lower in children than in adults (Leestma, et al 1997).
What can be done to reduce the risk of SUDEP?
While our understanding of SUDEP and how to prevent it is still unfolding there are measures that people with epilepsy and their families can take to try to reduce their risk:
How do I talk with my doctor about SUDEP?
If your doctor has not spoken to you about the health risks associated with epilepsy including SUDEP, PLEASE schedule an appointment to meet with him or her. Questions to ask include: What risks do I/my family member have for SUDEP? What can we do to reduce the risk of SUDEP?
Can using an anti-suffocation pillow prevent SUDEP?
There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.
Would using an audio monitoring device alert us to the possibility of SUDEP?
This type of device could alert you to a seizure that is accompanied by audible sounds but may not alert you that your loved one has stopped breathing.
Is SUDEP genetic?
There are some studies that suggest genetic factors may play a role, but no definite information is available at this time.
Can people die from epilepsy?
Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death:
Optimizing seizure control and use of safety measures can reduce the risk of epilepsy-related death.
Is it SUDEP if there was no evidence of a seizure?
The patient has to have a diagnosis of epilepsy for SUDEP to be considered. However, in SUDEP, the death may not be the direct result of a seizure. It is not certain what role seizures play in the death process. The absence of evidence of a seizure prior to death does not preclude it from being deemed SUDEP.
Where else can I get more information about SUDEP?
www.sudep.org – Epilepsy Bereaved
www.epilepsy.com – Epilepsy.com
www.sudepaware.org – SUDEP Aware
LeestmaJE, AnnegersJF, BrodieMJ, etal. Sudden unexplained death in epilepsy: observations from a large clinical development program. Epilepsia 1997; 38: 47-55.
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
For further reading:
Case-control study of SUDEP. Langan, Y., Nashef, L., & Sander, J.W.; Neurology 64, 1131-1133 (2005)
‘Molecular Trigger’ For Sudden Death In Epilepsy Found. ScienceDaily. Baylor College of Medicine (2009, October 15).
Mortality Risk in an Adult Cohort with Newly Diagnosed Unprovoked Epileptic Seizure: A Population-Based Study, Hans Lindsten, LENNART Nystrom and Lars Forsgren, Epilepsia, 41(11): 1469-1473, 2000
Studies are still being conducted and much more research is needed to answer the many questions which remain about SUDEP. The questions and answers listed above address some of the more basic and frequently asked questions related to SUDEP. For answers specific to your experience with epilepsy, please refer to your physician.