SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP is confirmed when someone with epilepsy dies and no other cause of death can be found during the post-mortem. Many of those who die are often young and otherwise healthy. It is one of the most devastating aspects of epilepsy.
How common is SUDEP?
A 2024 study, supported by Epilepsy Ireland, has established the incidence rate of SUDEP at 1:1400 in Ireland. This unfortunately equates to the loss of approximately 33 people per year in Ireland.
More on this study can be found by visiting the 'News' section of our website.
What causes SUDEP?
Unfortunately, there is still a lot we don’t know about SUDEP.
Globally, epilepsy researchers are working to find out what the exact causes of SUDEP are. Findings to date are leading researchers to believe that the most likely explanation is that a seizure interferes with a part of the brain that controls breathing or the heart (you can read more on Epilepsy Ireland supported research on this by visiting the 'Research' section of our website).
However, the mechanism behind why and how this happens remains unclear and we hope that with continued research, there will be a day when we know exactly what causes SUDEP and how it can be prevented.
What do we know about SUDEP and can risks be reduced?
SUDEP can affect any age group, but is more common in younger people. People living with uncontrolled generalised tonic-clonic seizures are at a higher risk of SUDEP.
We do know that there are certain risk factors for SUDEP, which are outlined further below but the key message about SUDEP is that a better a person's epilepsy is controlled, the lesser the risk of SUDEP. Increasing your understanding of epilepsy and using techniques to self-manage the condition are the most powerful weapons in reducing risk.
What are the factors which increase the risk of SUDEP?
Research on SUDEP has identified key risk factors which can contribute to SUDEP – many of which can be reduced through techniques to manage and know your epilepsy. The key risk factors are as follows.
- Having frequent tonic-clonic seizures. The more frequent, the higher the risk.
- Having nocturnal (sleep) seizures
- Having seizures while alone
- Having untreated epilepsy
- Abruptly changing epilepsy medications
- Not taking medication as prescribed
- Alcohol or substance abuse
- Demographics: The risk is higher in young adults, males and those whose seizures began in childhood.
How can these risks be reduced? Surely some of these are out of my control?
It is true to say that some of the risks such as demographics are outside a person with epilepsy’s control. However, there are measures that can be taken to reduce risk. The key is to take all steps you can to reduce your seizures and become seizure-free.
- Know your triggers
Epilepsy is an extremely individual condition, and everyone’s epilepsy is unique. Common triggers for a person’s seizures include anxiety, stress or tiredness. For others, diet can be a trigger while for many, alcohol and the effects of alcohol can be a seizure trigger. If you can better understand what your triggers are, you can make lifestyle choices to try and avoid or manage them. Remember that reducing the number of seizures that a person is experiencing reduces the risk of SUDEP. - Know your epilepsy
Knowledge is power with epilepsy and as mentioned above, everyone’s epilepsy is individual. Simply knowing what type of epilepsy you have can help in better managing it. If you aren’t clear on the type of epilepsy that you have, discuss this with your medical team. - Take your medication as prescribed
Epilepsy is most commonly treated through anti seizure medications, which aim to reduce the number of seizures experienced. One problem with these and other medications in general are side-effects. For some people with epilepsy, these can be so difficult that they decide to stop taking their medications. Doing this could lead to increased seizure activity which increases the risk of SUDEP. Please do not stop taking your medications without discussing with your medical team first. - Document your epilepsy
Ensuring your medical team have a clear picture of your epilepsy can help expand your medical team’s knowledge on how to better support you. A doctor can only act on the information that is presented to them – so the more information you can record and provide, the better. For example – take note of the frequency of your seizures; your triggers; your seizure types; the side-effects of your medications. Video clips of seizures can also be very useful for clinicians. - Seizure Alarms
If you are living alone or have seizures without any warning or “aura”, seizure alarms can help to alert a loved one or friend to the fact that you are having a seizure. This can help ensure that someone is responding to your seizure as soon as possible and is potentially there to monitor you during the seizure. Likewise, for those with sleep seizures, a night alarm can help to alert family member that a person is having a seizure in their sleep. Being able to respond as soon as possible to a seizure can help to reduce the risk of SUDEP as a witness may identify that something is wrong and call an ambulance. Contact your local Community Resource Officer for information on the different alarms that are available - their details are linked below. - Talk about it
If you haven’t had a discussion with your medical team about SUDEP or if you have any concerns, raise the issue with your medical team. Knowledge is power and often knowing more about a subject can ease concerns and provide insights on the measures that you can take to help reduce the risk of SUDEP.
Is the risk different for children with epilepsy?
Previously, it was thought that SUDEP in children was less common than in adults but current research now suggests previous numbers were underestimated and that the risk of SUDEP in children with epilepsy is broadly similar to that in adults. Risk increases if a child has a more complex form of epilepsy, for example, Dravet Syndrome. All the advice above is applicable for parents and carers supporting a child with epilepsy as well – with the difference being that you will be supporting/assisting the person/child with their lifestyle choices, monitoring their condition etc.
Further Information and Resources
- SUDEP Action
Epilepsy Ireland work closely with the UK organisation, SUDEP Action, who's specific focus is on the prevention of SUDEP and epilepsy-related deaths. They have a wealth of resources on their website, and the information provided above has been provided in consultation and collaboration with our colleagues in SUDEP Action. You can visit their website via the button below for more information about SUDEP.
Visit the SUDEP Action Day website
- Local Community Resource Officers
Epilepsy Ireland have a network of Community Resource Officers (CRO) across Ireland who are there to provide information and support to people with epilepsy and their families on their respective journeys with the condition. This includes having discussion on and providing information about SUDEP, epilepsy risk and potential preventative measures. If you have any concerns of need any support or information about epilepsy, you can find details of your local Community Resource Officer on our website via the button below.
Get details of your local CRO
- Booklets and Resources
Epilepsy Ireland have a range of booklets of resources designed to provide key information about epilepsy, aiming to help improve a person's self-management of their condition. These booklets and resources - including a seizure diary template for tracking your seizures, can be found on our website via the button below.
View our resources
- Campaign to reduce SUDEP and epilepsy-related deaths
One of our key strategic objectives is to Advance strategies to reduce the risk and incidence of epilepsy deaths. To this end, we are actively campaigning and lobbying for the development of a state-led national strategy to reduce SUDEP and epilepsy-related deaths. You can read more about this campaign by visiting the Advocacy section of our website via the button below.
Learn more about our campaign