Sometimes a person with epilepsy dies during or following a seizure for no obvious reason. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable.
For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them and their ability to have a ‘normal life’. Like some other medical conditions, epilepsy can be a cause of death in some individuals, although this is not common.
There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to Sudden unexpected death in epilepsy (or SUDEP). Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.
SUDEP is a research priority for Epilepsy Society, and researchers have made an important breakthrough in discovering that an individual’s genetic makeup may contribute to the risk of SUDEP.
SUDEP can be a difficult subject to talk about. It can be upsetting or worrying to think about. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you, and how to reduce them so you can feel more in control.
Definition of SUDEP
SUDEP is defined as
the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a structural or toxicological cause for death.
This means that SUDEP is when someone is believed to have died during or after a seizure where no other cause of death can be found.
Why does SUDEP happen?
The reasons for SUDEP are not clearly understood. As SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.
The risk factors around SUDEP
Although we don’t know for certain why it happens, there are some situations that are thought to make SUDEP more likely in certain people.
- As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk.
- SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.
It is worth remembering that the risk of SUDEP varies from one person to another but some of the risks around SUDEP can be reduced.
As SUDEP is thought to be linked to seizures happening, getting the best seizure control possible is a positive way to reduce risks, including the risk of accident, injury and SUDEP.
Getting the best seizure control possible might include:
- Taking anti-epileptic drugs (AEDs) consistently (every day) and around the same time or times each day. This is sometimes referred to as ‘being adherent’ to medication. If you have difficulties taking your medication (for example, if you find it difficult to remember to take your medication), aids such as pill boxes (drug wallets) might be helpful.
- Keeping a diary of when your seizures happen. This will help to show if there is a pattern to your seizures and whether any situations trigger your seizures (like being tired or stressed). It might also be useful to see how well medication is working to control your seizures. Download our free paper seizure diaries.
- If you are still having seizures, having a review of your epilepsy and treatment with a neurologist or epilepsy nurse might be helpful. There may be changes to your treatment that would help to reduce the number of seizures you have.
SUDEP and sleep
SUDEP often happens when the person is asleep. If you have seizures during sleep, having a seizure alarm that alerts someone who can help if you have a seizure in bed might be helpful.
Using safety or ‘anti-suffocation’ pillows, which have holes in them for ventilation means that if you are face down on the pillow during a seizure, you may be able to breathe more easily. However, there is no evidence that they are safer than ordinary pillows.
Find out more about alarms and safety aids.
Taken from our Risk leaflet. Order this leaflet from our online shop as part of our 'first five free' offer, or download the pdf using the link below.
First published in Epilepsy Review, Issue 10, Summer 2014. Dr Greg Rogers explains why talking about SUDEP with an epilepsy specialist can be reassuring and can help to minimise your own risks. Download PDF
Talk to someone
If you are concerned about SUDEP, for yourself or for someone else, talk to your neurologist about what any risks mean for you and your situation and how to lower the risk of SUDEP.
Information produced in May 2019
Understanding the complexities of the brain is key to understanding the causes of epilepsy and the impact of seizures on the brain. It is also pivotal in improving the diagnosis and treatment of epilepsy.
Approximately 1 in 1,000 adults with epilepsy and 1 in 4,500 children with the condition lose their lives to Sudden Unexpected Death in Epilepsy (SUDEP) every year. Congenica, the global diagnostic decision support platform provider, is collaborating with Epilepsy Society's Chalfont Centre and UCL to study the genomics of SUDEP.
Having seizures, or being told “you have epilepsy”, can affect people in different ways. This includes driving, sleep, work and travel.
If your seizures are controlled by treatment, your safety may not be affected. But if you continue to have seizures, safety may be an issue. Some safety issues may not be relevant to you or you may have your own ideas about what would make situations safer for you. Here are some suggestions to help you think about your safety at home.
Some people with epilepsy find it helpful to consider safety aids or equipment that might help them with day-to-day life. For example, an alarm, or monitor, that can alert family or friends when someone has a seizure.
Our templates make suggestions about what the risks may be because of someone’s seizures, risks associated with living conditions (around the home), and risks associated with outdoor activities.
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