Mortality and SUDEP

Individuals with epilepsy have a 2–3 times higher risk of premature death compared to the general population. However, the actual risk varies significantly depending on the type and underlying cause of epilepsy. Life expectancy is most notably reduced in a small subset of patients with epileptic and developmental encephalopathies (such as Dravet syndrome or SCN8A-associated DEE) and in children with severe neurological impairments present from birth.

On the other hand, some individuals—especially those with idiopathic epilepsy—may have a relatively low risk. On average, idiopathic epilepsy shortens life expectancy by about 2 years, while symptomatic epilepsy is associated with a reduction of approximately 10 years.

Common Causes of Premature Death in Epilepsy:

  • Trauma and drowning (often as a result of seizures)
  • Suicide
  • Status epilepticus
  • SUDEP (Sudden Unexpected Death in Epilepsy)

SUDEP

SUDEP (Sudden Unexpected Death in Epilepsy) refers to the sudden, unexpected, and unexplained death of a person with epilepsy, not associated with trauma, drowning, or status epilepticus, and with no structural or toxicological cause found at autopsy (referred to as “definite SUDEP”).

Known Risk Factors for SUDEP:

  • Frequent generalized tonic-clonic seizures
  • Non-adherence to prescribed anti-seizure medications
  • Failure to follow lifestyle recommendations
  • Nocturnal seizures
  • Long-standing epilepsy (more than 15 years or onset before age 16)
  • Male sex

Can SUDEP Be Prevented?

At present, there is no guaranteed way to prevent SUDEP. However, efforts can be made to reduce risk by addressing modifiable factors:

  • Optimizing epilepsy treatment:
    The primary goal is to achieve the best possible seizure control using appropriately selected anti-seizure medications with minimal side effects.
  • Patient and family education:
    Providing clear information about SUDEP and the importance of treatment adherence helps empower individuals and families to manage the condition more safely.
  • Nighttime seizure monitoring:
    Using seizure detection devices during sleep may allow for early intervention in the event of a seizure.

Regular medical follow-ups and strict adherence to prescribed medications and lifestyle recommendations are essential. Even if your seizures are currently well-controlled, you should never stop or alter your treatment without first consulting your healthcare provider.