UNDERSTANDING EPILEPSY
SUDEP
SUDEP is the sudden unexpected death in someone with epilepsy, who was otherwise well and in whom no other cause of death can be found, despite thorough post-mortem examination and blood tests. This does not include those who die in status epilepticus and those who die from a seizure-related accident.
Understanding the risk
In general, the risk of SUDEP for an adult with epilepsy is low, at one in 3,000 persons over a one-year period. For persons with poorly-controlled seizures, the risk is one in 100 persons over one year. In children, SUDEP is an even rarer occurrence with the risk as low as one to two in 10,000 over one year.
We do not know what causes SUDEP. Current research leads to respiratory or cardiac dysfunction, but the cause of this dysfunction still eludes us and we cannot know who will be affected.
Possible risk factors
Over the years some possible risk factors have been suggested including:
- Young adulthood
- Onset of seizures at an early age
- Presence of tonic clonic seizures
- Increased frequency of seizures
- Frequent changes of dose and type of Antiepileptic Drugs (AEDs)
- Poor compliance with AEDs
- Alcohol abuse
- Nocturnal seizures.
Risk factors only tell part of the story. Sometimes individuals with infrequent seizures die, while others with more frequent and apparently more severe seizures do not.
A positive approach
People with epilepsy can take a very positive approach to reducing risk by making seizure freedom a high priority. Good control of seizures is often achieved simply by taking the medication prescribed, at the correct dose on a regular basis.
It is generally agreed that seizure frequency is the factor most strongly associated with an increased risk of SUDEP.
Being informed
Young adults, however, often have irregular lifestyles and overlook the need to keep to a routine with their medication. Sometimes they experience side-effects with their medication and decide to stop taking it. In either case seizures may occur or increase, but they may choose to ignore this, fearing that disclosure may affect their ability to retain a driving licence, cause problems with their employer or increase parental concern.
They may feel an occasional seizure is not too serious and that they can manage this. However, allowing seizures to occur increases their risk of SUDEP. We should all communicate to our young adults the danger of hiding or ignoring seizures, stopping or irregularly taking medication and that having ‘a life’ doesn’t have to mean an excessive lifestyle. They need encouragement to talk to a doctor with a listening ear who can work with them to plan a treatment program that they accept, understand and follow.
Managing the risk
Life is precious and, while the risk of SUDEP is low, all factors that may lead to injury or loss of life should be included in any risk management discussion. Informed decisions about treatment and lifestyle can only be made if all the information is provided and consequences discussed.
Until research finds that elusive cause for SUDEP, we can’t prevent it from occurring but we can try to minimise the risk by seeking prompt medical advice when a seizure occurs, taking the medication as prescribed and being aware of lifestyle factors that can provoke seizures and ways these factors can be managed.
The above information was taken from Epilepsy Australia’s publication Sudden Unexpected Death in Epilepsy: a global conversation. If you would like to find out more about SUDEP the full text can be accessed online at Epilepsy Australia.
Sudden Unexpected Death in Epilepsy: a global conversation
The publication Sudden Unexpected Death in Epilepsy: a global conversation(1) brings together both the science and the human experience of sudden unexpected death in epilepsy (SUDEP) in an accessible form for all interested readers.
This publication is the first to draw together considered observations by leading authors in the medical, legal and health professional fields – each a unique perspective on SUDEP, personal stories of families affected by SUDEP and future challenges for epilepsy associations across the globe in providing this information in an appropriate and sensitive manner.
Contributors discuss many issues including: what is SUDEP? How does SUDEP occur? Who is at risk? SUDEP and the post mortem, Communicating risk, Educating health professionals and Determining the right to know.
(1) Edited by Denise Chapman, Brendon Moss, Rosemary Panelli and Russell Pollard for Epilepsy Australia and partnered by Epilepsy Bereaved (UK).
Download SUDEP A Global Conversation here.
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