By: Nicholas Parekh and Natalie L. Boehm, MBA, RBLP-T
What is SUDEP?
According to the Centers for Disease Control and Prevention, SUDEP or Sudden Unexpected Death in Epilepsy, refers to deaths in people with epilepsy that are not from injury, drowning, or other known causes. SUDEP account for 7-17 percent of deaths among people with epilepsy (Sperling, 2001). SUDEP occurs in about one in one-thousand epilepsy patients per year. SUDEP and its causes are not well understood.
Causes of SUDEP
There are no exact known causes of SUDEP. Possible causes of SUDEP are:
Breathing Changes: A seizure may cause a person to have pauses in breathing. Pauses in breathing can reduce the oxygen levels in the blood to drop to a dangerous level. If a person’s airway gets blocked during a seizure, the result can be suffocation.
Heart Rhythm Changes: In some situations, a seizure can cause a dangerous heart rhythm, leading to cardiac arrest.
Other causes: Can result from a combination of breathing trouble and abnormal heart rhythm.
How does SUDEP occur?
As mentioned above, SUDEP is precipitated by cardiorespiratory arrest. Heart electrical abnormalities during a seizure may result in a dangerous arrhythmia or bradycardia (low heart rate) which may lead to cardiac arrest. If no one is present to perform cardiopulmonary resuscitation (CPR), the patient will die within minutes. The chaotic brain activity of a seizure may disrupt the function of brain centers that control breathing and heart rate like the brainstem. the patient may stop breathing (apnea) and die quickly.
Diagnosis of SUDEP
According to the article, Sudden Unexplained Death in Epilepsy, the following requirements need to take place for a cause of SUDEP to be confirmed:
- The victim must have had epilepsy, defined as recurrent unprovoked seizures.
- Death must have occurred unexpectedly, with no obvious medical cause, while in a reasonable state of health, in the absence of trauma and drowning.
- Death must have occurred suddenly when observed.
- Ther may or may not have been evidence of a seizure, but status epilepticus must not have occurred. Evidence for a seizure could consist of either a witnessed seizure or clinical evidence such as a bitten tongue or cheek.
Risk Factors of SUDEP
The following factors increase the risk of SUDEP:
- Uncontrolled or frequent seizures
- Generalized convulsive/tonic-clonic seizures
- Seizures that start at a young age
- Many years of living with epilepsy
- Missing medication
- Consumption of alcohol
SUDEP and Families
It is essential that families with a loved one with epilepsy who is a higher risk for SUDEP be educated about what SUDEP is and what steps need to be taken to reduce risk of SUDEP. In the article, Sudden Unexpected Death in Epilepsy (SUDEP): A Review of Risk Factors and Possible Interventions in Children, only 8.7 to 29 percent of health care professionals in any setting report discussions of SUDEP with all or most of their patients. Reasons pediatricians are not discussing SUDEP with parents regarding their children is due to the lack of knowledge or assuming that their neurologist would discuss it (Wicker and Cole, 2021). A survey of pediatric primary care providers demonstrated that 85.6 percent of providers were not familiar with SUDEP (Wicker and Cole, 2021).
Taking steps to preventing SUDEP is important for all individuals and families that are battling epilepsy. In the article, What can be done to reduce the risk of SUDEP?, the authors of the article suggest the following to reduce the chances of SUDEP occurring:
Good control of seizures: Antiepileptic drug therapy is still one of the best ways of controlling seizure activity. Taking the steps to fill prescriptions on time, take medication on a timely schedule, and understanding how to follow treatment is essential. Other treatments available when medication is not enough are devices such as vagus nerve stimulators, epilepsy surgery, and ketogenic diet.
Reduction of stress: Stress has a major impact on individuals batting epilepsy. Situations that can cause stress can result in an increase in seizure activity. When someone becomes stressed, they may forget to take their medication. Negative emotions such as anxiety or being frightened can result in seizure activity, especially in patients with temporal lobe epilepsy. High increases in cortisol levels due to stress can trigger seizure activity as well. It is important for people who are battling epilepsy to find techniques to alleviate stress. Activities such as meditation and yoga can help to reduce stress levels and reduce seizure activity.
Participation in physical activity and sports: physical activity increases endorphins, resulting in a decrease of stress and decrease in seizure activity. Physical activity has been considered to have an anticonvulsant effect and with proper supervision, individuals with epilepsy can be active, decrease seizure activity levels, and prevent cardiac abnormalities that can increase the risk of SUDEP.
Supervision at night: Bedtime seizure monitors and breathing alarms are valuable resources for families who have a loved one with epilepsy. Bedtime seizure monitors and breathing alarms alert family members when a nocturnal generalized tonic-clonic seizure takes place, allowing them to administer any necessary aid and helping with recovery when the person enters the postictal state.
Family members’ knowledge of cardiopulmonary resuscitation (CPR) techniques and the basics of defibrillator use: families need to discuss with their physician what strategies need to be put into place to help prevent SUDEP. Training family members to administer CPR can help to decrease the risk of SUDEP but cannot prevent it. More work needs to be done to educate and train families to prevent SUDEP from occurring.
According to the Centers for Disease Control and Prevention, SUDEP or Sudden Unexpected Death in Epilepsy, refers to deaths in people with epilepsy that are not from injury, drowning, or other known causes. There is no exact known cause of SUDEP. There are steps that can be taken to reduce the risk of SUDEP taking place. Families and individuals need to be educated about SUDEP to take the proper precautions to reduce the chances of SUDEP taking place.
Centers for Disease Control and Prevention (2022). Sudden Unexpected Death in Epilepsy (SUDEP). Centers for Disease Control and Prevention. Retrieved from: https://www.cdc.gov/epilepsy/communications/features/sudep.htm
Scorza, F.A., Arida, R.M., Terra, V.C., and Cavalheiro, E.A. (2010). What can be done to reduce the risk of SUDEP? Epilepsy & Behavior, 18(3), 137-138. Doi: https://doi.org/10.1016/j.yebeh.2010.04.046
Sperling M. R. (2001). Sudden Unexplained Death in Epilepsy. Epilepsy currents, 1(1), 21–23. https://doi.org/10.1046/j.1535-7597.2001.00012.x
Wicker, Emily, and Justin W Cole. “Sudden Unexpected Death in Epilepsy (SUDEP): A Review
of Risk Factors and Possible Interventions in Children.” The journal of pediatric
pharmacology and therapeutics : JPPT : the official journal of PPAG vol. 26,6 (2021):