SUDEP

The Epilepsy Connection is working to raise SUDEP awareness in part by teaching  seizure recognition and  first aid.  We  will continue building relationships with medical professionals and those working to develop seizure detection devices in the prevention of deaths caused by seizures.

 

What is SUDEP?

Sudden unexplained death in epilepsy is a mysterious, rare condition, better known as SUDEP, in which typically young or middle-aged people with epilepsy die without a clearly defined cause. By definition, (1) death is sudden and unexpected, (2) a clear cause of death must be absent, and (3) victims must have had epilepsy. Victims are often found in bed with or without signs of having had a convulsive seizure, but were otherwise in a reasonable state of health at the time of death. Although seizures are suspected to have occurred prior to death, there should be no evidence of seizure as the direct cause of death.

What causes SUDEP?

Although the cause of death is unknown, some researchers suggest that a seizure causes an irregularity in the heart rhythm. More recent studies have suggested that a combination of impaired breathing (apnea), increased fluid in the lungs (impairing the exchange of oxygen and carbon dioxide), and being face down on the bed all combine to cause death due to impaired respiration. In many cases, death probably occurs after a seizure has ended.

How common is SUDEP?

The risk of SUDEP for a person with epilepsy is about 1 in 1000 per year. The risk for people with severe, intractable epilepsy who have frequent seizures and take large doses of many anti-epileptic drugs is much higher. Among all patients with epilepsy, SUDEP accounts for less than 2% of deaths. The risk is highest in young male adults (ages 20-40), with frequent convulsive seizures, taking several anti-epileptic medications.

What are the risk factors for SUDEP?

Major risk factors for SUDEP appear to relate to the severity of the epilepsy, as SUDEP is more common in people with: 

 

  • Seizures that can’t be controlled
  • Treatment with multiple anticonvulsant drugs
  • Having long standing chronic epilepsy
  • 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

 

On the other hand, SUDEP is rare in patients with new onset epilepsy, in patients without convulsive seizures as a seizure type, and in patients with well controlled seizures.

 

 Safety Precaution Tips

A few safety precautions can minimize the chances of SUDEP:

   1. Patients should make sure to take the medications prescribed for them.

   2. Patients should visit with their doctor regularly, especially if convulsive seizures are not completely controlled.

   3. Adult patients with a high likelihood of tonic-clonic seizures in sleep should be supervised whenever possible. (SUDEP is extremely rare in children with epilepsy and in other patients who are well monitored. In fact, supervision has emerged as a protective factor for SUDEP, independent of seizure control.)

   4. Basic first aid should be provided during a seizure, including rolling the person onto one side, checking respiration and avoiding putting any object in the patient’s mouth.

   5. Family members and/or caregivers of patients with uncontrolled convulsive seizures should learn cardiopulmonary resuscitation.