"My life is my message" ~ Gandhi

Leveling the playing field in the fight against SUDEP and Epilepsy

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What is SUDEP?

Q: 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:

  • Sometimes epilepsy is a symptom of a more serious condition, such as a stroke or a tumor that carries an increased risk of death.
  • Accidents such as drowning, burning, choking, or falling can occur during a seizure, and may result in injuries that are serious or potentially life threatening.
  • Persons with epilepsy have an increased risk for depression and suicide.
  • Very long seizures or seizures that happen quickly, one after another (called status epilepticus), can also be life-threatening. Status epilepticus can sometimes occur when seizure medicine is stopped suddenly.
  • Some people with epilepsy may die suddenly, without explanation. This is called SUDEP which stands for Sudden Unexplained Death in Epilepsy. SUDEP is not well understood, although current research indicates it may be related to heart rhythm problems and/or respiratory problems during a seizure. The risk of sudden death occurs more among people with convulsive seizures, especially generalized tonic-clonic seizures, which are not well controlled.

Good seizure control and use of safety measures can reduce the risk of epilepsy-related death.

Q: 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):

  • The person has epilepsy, which is defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly.
  • The death occurred during normal activity (often during sleep and found in or near the bed).
  • An obvious medical cause of death could not be determined at autopsy.

The death was not the direct result of status epilepticus

Q: What causes SUDEP?

A: 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

Q: Who is at risk for SUDEP?

A: 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

Q: What can be done to reduce the risk of SUDEP?

A: 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

Q: Can using an anti-suffocation pillow prevent SUDEP?

A: There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.

Q: Would using an audio monitoring device alert us to the possibility of SUDEP?

A: 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.

Q: How do I talk with my doctor about SUDEP?

A: 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?

Q: Is SUDEP genetic?

A: There are some studies that suggest genetic factors may play a role, but no definite information is available at this time.

Q: Can I donate my loved one’s tissues to research?

A: At this time there is no national repository that collects tissue and other samples to be used in research on SUDEP. However, Dr. Alica Goldman is 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).


(Source:Epilepsy Foundation )