Sudden Unexpected Death in Epilepsy (SUDEP)

• Defined as an sudden, unexpected death in a person with epilepsy
  - The individual is in good health other than the epilepsy
  - There is no obvious cause such as an observed seizure, seizure-related trauma, or drowning, but SUDEP might occur during or after and unobserved seizure
  - No obvious cause of death on autopsy such as overdose with medication

• Patients with epilepsy have a higher risk of premature death than the general public.  SUDEP may be a contributing factor to this higher risk
  - 1 and 10 persons with epilepsy are estimated to die from SUDEP
  - SUDEP usually occurs in persons with severe epilepsy.
    * Individuals who have mild epilepsy are at minimal risk of SUDEP. 
    * Child who outgrow epilepsy are not thought to be at risk of SUDEP
    * SUDEP usually occurs between 25-50 years of age

• Persons with epilepsy at risk of SUDEP
  - History of epilepsy greater than 2 years
  - Poor seizure control
  - Generalized Tonic-Clonic Seizures
  - Profound intellectual disabilities
  - Taking more than 2 seizure medications
    * This likely reflects poor seizure control, but some seizure medication are suspected of increasing the risk of SUDEP
  - Low seizure medication levels
    * This likely reflects non-adherence with prescribed seizure medication
  - Seizures during sleep

• Cause of SUDEP
  - At present, the cause is unknown
  - Suspected causes
    * Airway obstruction during or after a seizure (choking)
    * Apnea (breathing stops)
    * Pulmonary edema (lungs fill with fluid without clear explanation)
    * Cardiac arrhythmias (irregular heartbeats)

• Genetic causes are suspected and testing for individuals at risk might be possible in the future

• Prevention of SUDEP
  - Adherence with medical therapy
    * Take prescribed seizure medications
    * Go for blood work as instructed to monitor medication levels
    * Attend follow-up appointments
    * Fill prescriptions regularly and avoid running out of medications
  - Consider a second opinion at an Epilepsy Center if seizures are frequent and uncontrolled despite good adherence with therapy
  - Individuals with frequent nocturnal seizures may consider
    * An alert system or monitor by the bedside
    * Not sleeping alone if possible
    * Switching from a soft feather pillow to a firm foam pillow to prevent suffocation