What is SUDEP and what are the risks?

Sudden Unexpected Death in Epilepsy is uncommon but is a recognised syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed. SUDEP has been shown to be related to seizures. SUDEP can occur in individuals with infrequent as well as severe epilepsy, but risks are negligible for anyone who is seizure-free.
Some types of seizures are not normally associated with SUDEP so it is important to talk with your doctor to establish whether this is a risk which is relevant to you or not and to put any risk into proper perspective.

Particular risk factors of SUDEP include:

  • Generalised tonic-clonic seizures
  • Uncontrolled seizures
  • Young adults
  • Seizures during sleep
  • Unwitnessed seizures (living alone)
  • Abrupt and frequent changes in medication
  • Failing to take prescribed medication
  • Excess of alcohol

People with epilepsy whose seizures are not recorded in medical notes*
*We think this may be a measure because regular monitoring of seizures is part of good management of epilepsy.

Why do some seizures and not others carry risks?

It is not fully understood why SUDEP deaths occur. Several different mechanisms may be involved, and there may be no single explanation for all SUDEP deaths. 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. his 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.

SUDEP and children

Although SUDEP is known to occur in people of all ages including children (mainly in children with other difficulties) it is rare in the under 16 age group.

For further information, help and support if you have been affected by SUDEP,
please contact the Epilepsy Bereaved support line 01235 – 772852
or go to their website: www.sudep.org