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Question What is SUDEP?
Answer

SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP refers to such deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Often SUDEP occurs with evidence of an associated seizure.

   
Question What causes SUDEP?
Answer No one knows what causes SUDEP. However, irregularities in heart rhythm, breathing dysfunction, disturbance in brain circulation, and seizure-induced hormone and metabolic changes have all been suggested as potential causes of SUDEP (Surges, et al 2009). It is not yet known what role seizures play in SUDEP.
   
Question Who is at risk for SUDEP?
Answer 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:
  • Seizures that can’t be controlled
  • Treatment with multiple anticonvulsant drugs
  • Having long standing chronic epilepsy

Other risk factors include:
  • Generalized tonic-clonic seizures
  • Seizures that happen at night (called nocturnal seizures)
  • Not taking anticonvulsant medicine as prescribed
  • Stopping the use of anticonvulsant medicine abruptly
  • Developmental delays
  • Onset of epilepsy at a young age
   
Question How often does SUDEP occur?
Answer

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.”

   
Question How often does SUDEP occur in children with epilepsy?
Answer 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).
   
Question Is SUDEP genetic?
Answer There are some studies that suggest genetic factors may play a role, but no definite information is available at this time.
   
Question How do I talk with my doctor about SUDEP?
Answer

If your doctor has not spoken to you about the health risks associated with epilepsy including SUDEP, 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?

   
Question What can be done to reduce the risk?
Answer 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:
  • Maximize seizure control. Take medication as prescribed. If medicines do not work, then consider other therapies such as epilepsy surgery, the vagus nerve stimulator, and the ketogenic diet.
  • Eat well, get enough rest and regular exercise and keep stress to a minimum whenever possible.
  • Be aware of and avoid any potential seizure triggers. Keep a record of things that occurred before a seizure (such as, were you ill, tired, stressed, hungry? Where did the seizure occur and what time of day was it?).
  • Night time supervision
  • Heart rate monitor
  • Breathing alarm
  • Knowledge of emergency resuscitation measures including CPR and use of a defibrillator
   
Question Can using an anti-suffocation pillow prevent SUDEP?
Answer There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.
   
Question Would using an audio monitoring device alert us to the possibility of SUDEP?
Answer 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.
   
Question What can I do for support after the death of a loved one?
Answer Contact any of the organizations with websites listed below or contact your local Epilepsy Foundation affiliate
   
Question How is SUDEP determined?
Answer

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):

  1. The person has epilepsy, which is defined as recurrent unprovoked seizures.
  2. The person died unexpectedly while in a reasonable state of health.
  3. The death occurred suddenly.
  4. The death occurred during normal activity (often during sleep and found in or near the bed).
  5. An obvious medical cause of death could not be determined at autopsy.
  6. The death was not the direct result of status epilepticus.
   
Question Is it SUDEP if there was no evidence of a seizure?
Answer The person 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.
   
Question Can I donate my loved one’s tissues to research?
Answer

Yes, in some cases. The North American SUDEP Registry (NASR), an international group of collaborating researchers, collects DNA and brain tissue to advance understanding of SUDEP. The purpose of the registry is to provide researchers with a body of data that will result in greater understanding of SUDEP, its causes and possible ways to reduce patient risk. Please call NASR for more information on how to participate in this critical study. WEBSITE

You may also contact Dr. Alica Goldman, a neurologist specializing in the field of epilepsy.She and her colleagues at The Department of Neurology at Baylor College of Medicine are conducting a research study called "Ion Channels in Epilepsy*". The aim of the research is the identification of the genetic risk factors that predispose an individual to epilepsy and to sudden death. This study is funded by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Stroke (NINDS).

In order to perform this research, the investigators need a blood sample or a small piece of fresh tissue from the person who died as a result of the seizure disorder.

If you would like to learn more about this study or for participation, please contact Dr. Alica Goldman at (email: agoldman@bcm.edu) or the study coordinator, Ms. Melissa Lambeth at (email: lambeth@bcm.tmc.edu; or phone: 713-798-2227).



*This epilepsy study listing is for information purposes only; and the reader assumes full responsibility and risk for the appropriate use of the information provided. The information concerning the study was sent to the Epilepsy Foundation by the investigator or staff conducting the research. The Epilepsy Foundation, its affiliates, officers, directors, employees and agents do not warrant or guarantee the accuracy or completeness of this information and specifically disclaims any liability therefore.

   
Question Where else can I get more information about SUDEP?
Answer www.sudep.org – Epilepsy Bereaved
www.epilepsy.com – Epilepsy.com
www.sudepaware.org – SUDEP Aware www.cureepilepsy.org/downloads/SUDEP.pdf
   
 

Reference

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.

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.

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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