What is SUDEP?
SUDEP Stands for Sudden Unexpected Death in Epilepsy. Medically this translates to the “sudden unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in an individual with epilepsy, with or without evidence of a seizure and excluding documented status epilepticus where post-mortem examination does not reveal a cause for death".
How common is SUDEP?
While SUDEP is a devastating aspect of epilepsy, it is important that you know that SUDEP is a rare event. Overall, people with epilepsy are at a 1 in a 1000 (0.1%) risk of SUDEP each year.
It is estimated that between 21-44 people pass away due to SUDEP every year in Ireland. This figure is calculated by applying data on the incidence of SUDEP from international studies to the Irish population. As of now, there is no national data which accurately tells us the exact Irish incidence rate. Epilepsy Ireland has recently invested in a study which is seeking to learn more about the incidence of SUDEP and epilepsy related deaths in general in Ireland. You can read more about this study here.
What causes SUDEP?
Unfortunately, there is still a lot we don’t about SUDEP. Globally, epilepsy researchers are working to find out what the exact causes of SUDEP are. Findings to date including this Epilepsy Ireland funded study 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. However, the mechanism behind why and how this happens remains unclear and we hope that with continued research, there will be a day where we know exactly what causes SUDEP and how it can be prevented.
If we don’t know a lot about why SUDEP happens and what causes it, why talk about it?
In the past, SUDEP was a subject that many people with epilepsy, their family members and their clinicians did not want to discuss. However, attitudes have changed. In 2020, an Epilepsy Ireland survey revealed that 81% of people with epilepsy wanted to know more about SUDEP.
At Epilepsy Ireland, we are confident that research will eventually provide the answers to the unanswered questions about SUDEP we have today. However, in the absence of this breakthrough, it is best to focus on what we DO know, rather than what we don’t.
What do we know about SUDEP?
- We do know that the risk of SUDEP varies from low to very low – it is a devastating but rare aspect of epilepsy.
- We do know that it can affect any age group of those living with epilepsy but is more common in younger adults.
- We do know that the better a person’s epilepsy is controlled, the lesser the risk of SUDEP
- We do know that certain types of seizures are not associated with SUDEP, such as absence or myoclonic seizures. However, the risk is higher if you have generalised tonic-clonic seizures.
- We do know that there are risk factors for SUDEP – which can be reduced by better understanding your epilepsy and using techniques to self-manage the condition
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 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 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-epileptic drugs, 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 are also very useful for clinicians. Our App is one such way of recording all of this information.
- 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.
- 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.
I’m a parent/carer of a child/person with epilepsy and I’m concerned about SUDEP – is there any specific advice?
The risk of SUDEP in children with epilepsy is significantly lower, but the risk will change as the child gets older, so maintaining seizure freedom is equally important. All the advice above is applicable for parents and carers as well – with the difference being that you will be supporting/assisting the person/child with their lifestyle choices, monitoring their condition etc.
Are there any further resources available that can help me learn about SUDEP and assist with the management of epilepsy?
Epilepsy Ireland work closely with the UK organisation, SUDEP Action and we encourage you to visit their hugely informative website.
Epilepsy Ireland’s Community Resource Officers can also discuss SUDEP with you and help support you in better managing you/ your child’s epilepsy.
We also have several different resources and booklets which may be of assistance in helping you better understand and manage your/your child’s epilepsy.
We hope that you found this section of our site informative. If you have any concerns or require any further information, please do not hesitate to contact your local Community Resource Officer.