The Causes of Epilepsy Deaths
Although, in the past, people were told that seizures could not be fatal, about 1,000 people die from Epilepsy each year in the UK. This is more than the average annual number of cot death and AIDS cases combined. Of these 1,000 Epilepsy deaths per year, approximately half of these are attributed to SUDEP. We do not know the number of epilepsy deaths in other countries across the world but people with epilepsy have an excess mortality risk of 2-3 times the general population and the overall risk of SUDEP deaths is 1:1000 people with epilepsy per annum.
The Causes of Epilepsy-Related Deaths are:
- SUDEP (Sudden Unexpected Death in Epilepsy)
- Accidents e.g. drowning following a seizure
- Status Epilepticus where there is evidence of a seizure or series of seizures lasting more than 30 minutes
- Suicide
SUDEP Deaths
This is when a person with epilepsy dies suddenly and the post-mortem fails to establish any other cause of death.
The majority of epilepsy-related deaths are SUDEP. In the UK it is estimated that there are about 500-600 SUDEP deaths each year.
SUDEP 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
All sudden unexpected deaths should be subject to post-mortem to ensure that other possible causes of death are eliminated.
One of the problems highlighted by research is that often sudden deaths in epilepsy are not adequately investigated and that sometimes causes are given for the death for which there is no evidence e.g. suffocation when there is no actual evidence of a breathing obstruction or status epilepticus when there is no evidence that a seizure lasted more than 30 minutes. The Royal College of Pathologists published specific guidance on investigation of sudden deaths in people with epilepsy in 2005 and a copy of this guidance is available from Epilepsy Bereaved or can be seen on the Royal College website:
www.rcpath.org/resources/pdf/AutopsyScenario6Jan05.pdf
Epilepsy Bereaved is advised by a panel of epilepsy experts and specialist pathologists. We therefore have access to information and advice to assist families understand the cause of death.
*Figures can vary according to source but figures quoted are a representative.
