The term Sudden Unexpected (Unexplained) Death in Epilepsy (SUDEP) refers to the unexpected death of a person with epilepsy, who was otherwise healthy, and for whom no other cause of death can be found. Between 500 and 1,000 people with epilepsy die of SUDEP in the UK each year, usually whilst asleep/alone, and most of these deaths are thought to be caused by a severe convulsive seizure affecting vital functions such as breathing or heart rhythm. Despite ongoing research, risk factors for SUDEP are only partly understood, but certain genes have recently surfaced as potential culprits. This gives hope that people with epilepsy who are at particular risk of SUDEP may be identified in the future and extra precautionary measures taken.
Factors that are thought to increase a person’s risk of SUDEP include:
• Early age of epilepsy onset (before 16 years of age)
• Having uncontrolled seizures, particularly generalised tonic-clonic seizures
• Missing doses of epilepsy medication
• Being a young adult (in particular male)
• Having seizures at night or when alone
You can find out more information about managing the risk of SUDEP here.
We are currently funding three studies into the causes of SUDEP and potential risk factors for SUDEP and other epilepsy-associated deaths. We hope that the findings from these investigations will give scientists vital knowledge of why SUDEP happens, and that in the long term they will contribute to the prevention of all types of epilepsy-related death. You can read more about this work below.
Why does SUDEP happen and can it be prevented?
“SUDEP is a devastating outcome of epilepsy. The more we understand about its underlying mechanisms, the more likely we are to be able to prevent it in the future.” Professor John Jefferys
Professor Jefferys and colleagues, at the University of Oxford, along with collaborating researchers in the UK and the USA, are investigating how breathing and heart function are affected by seizures and other changes in brain waves related to epilepsy, and how this might lead to SUDEP. Professor Jefferys’ research will provide direct evidence on likely causes of SUDEP and may help in the identification of preventative strategies. You can read more about this project here.
Identifying people who are at risk of SUDEP
This pilot study, led by Dr Robert Delamont at King’s College London, is exploring whether the presence of a certain EEG trait means that people are more at risk of SUDEP. If this is found to be the case, in the future those who are most susceptible to SUDEP and would benefit from extra monitoring could potentially be identified early on. Click here to read more.
“Improving our understanding of the changes seen in seizures, by studying seizures as they occur is a vital step in this process of understanding the contributions that changes to heart and lung function, breathing and blood pressure make to causing sudden death.” Dr Shane Delamont
Risk factors for deaths in adults with epilepsy
“This study will give us a much better understanding of the risk factors for epilepsy-related death. We also hope that it will highlight changes in epilepsy care that might help to avoid some of these deaths.” Dr Susan Duncan
Dr Susan Duncan, at the Western General Hospital Edinburgh and Muir Maxwell Epilepsy Centre, is looking at the risk factors for deaths in adults with epilepsy. The study will provide accurate estimates of the frequency, causes and risk factors for deaths in adults with epilepsy. Dr Duncan hopes to identify factors which could be modified or prevented through improvements in epilepsy care, and anticipates that the results of this study could lead to improvements in care – and fewer deaths – within 3 to 5 years. To read more about this, click here.
International Expert Workshop
Last year we held an international expert workshop entitled SUDEP: time for prevention, at St Anne’s College in Oxford . This two-day event, chaired by Dr Lina Nashef and Professor Mark Richardson from King’s College London, brought together eminent researchers and clinicians from around the world to discuss the very latest evidence surrounding SUDEP and the direction of future research. The main themes of the workshop were: people most at risk; the role of genes; the effectiveness of current interventions (medical and non-medical (e.g. seizure alarms)); how and when people should be informed about SUDEP, and the impact that SUDEP has on both families and physicians.
The meeting generated many fruitful discussions, and we already know of three international collaborations that have been forged as a result. Again, we hope that this will lead to an increased understanding of SUDEP, and ultimately to more effective ways of preventing it.
The proceedings of our SUDEP workshop were published in a special supplement of the journal Epilepsia. Please contact us if you would like to access of copy of the proceedings.
Click here to read about the important work that Epilepsy Research UK is funding.