SUDEP Action

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Epilepsy Deaths

Although epilepsy related deaths are rare, about 1200 people die from Epilepsy each year in the UK. Around half of these deaths are SUDEP (sudden unexpected death in epilepsy).

The Causes of Epilepsy-Related Deaths are:

  • SUDEP.
  • Accidents.
  • Status Epilepticus (where there is evidence of a seizure or seizures lasting 30 minutes or more).
  • Suicide.

SUDEP Deaths

SUDEP is when a person with epilepsy dies suddenly and the post-mortem fails to establish any other cause of death.  Most epilepsy-related deaths are from SUDEP.  In the UK it is estimated that there are about 500-600 SUDEP deaths each year.  It is considered to be more common in young adults, in people with epilepsy who are not seizure free and in people who have seizures at night.

Causes

Several different mechanisms may be involved, and there may be no single explanation for all cases.  The two primary explanations that are most likely are:

  • Cardiac: If there is an electrical storm in the brain it may spread to areas that control heartbeat.  This could cause a fatal cardiac event.
  • Respiratory: An electrical storm may spread to the part of the brain responsible for respiration.  It is known that many people who experience seizures stop breathing for a significant time.

Investigation of sudden deaths in a person with epilepsy

All sudden unexpected epilepsy deaths should be subject to post-mortem to ensure that other possible causes of death are eliminated.  The Royal College of Pathologists provides guidance on investigation of sudden deaths in people with epilepsy.  A copy is available from the Royal College website:

 

PDF iconguidelines on autopsy practice

 

Sudep Action are advised by a panel of experts and can provide information that may help with understanding the cause of death.

  *Figures can vary according to source but figures quoted are a representative.

 

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