SUDEP

Every year, roughly one in every thousand people with epilepsy will die suddenly with no obvious cause. This is what we call Sudden Unexpected Death in Epilepsy or SUDEP.

Thankfully the risk of SUDEP is low, but will vary from person to person. It is something to raise with your doctor. SUDEP is not associated with all seizure types so you may not need to consider this risk. The risk may be greater for a small number of people, which is why it’s important to talk to your doctor about your own type of epilepsy.

If SUDEP is a risk for you, you need to think about risks and how to lessen them. Your doctor can also advise you on what choices you may have to reduce risk.

Can I die from epilepsy?

Many people are not aware that someone with epilepsy has a higher risk of dying than people without epilepsy. Although many people have concerns about the effects of seizures such as injuries or drowning, some people may think that seizures cannot be fatal, but in fact seizures, like other conditions such as asthma or diabetes, do carry some risk.

This can be a difficult topic to talk about but it is important to understand the facts so you know the right questions to be asking your doctor.

People whose seizures are not controlled are at a higher risk of injury, complications, and occasionally someone with epilepsy can die. This is why it is so important to try to manage seizures well. Here we discuss one of the more common causes of dying from seizures which is called “Sudden Unexpected Death in Epilepsy”, or SUDEP.

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found during an autopsy. Every year, more than 1 in 1,000 people with epilepsy die from SUDEP. If seizures are poorly controlled, the risk of SUDEP can increase to about 1 in 300. These sudden deaths are rare in children, but are the leading cause of death in young adults with poorly controlled seizures, particularly tonic clonic seizures.

How does it happen?

The person with epilepsy is often found dead in bed, frequently face down. Mostly, there is no sign a seizure has happened but about one third of people show signs of a seizure close to the time of death. It is not clear what the cause of death in SUDEP is, but some researchers believe that a seizure causes an irregular heart rhythm. Also, breathing difficulties, brain swelling during a seizure or suffocation are other possible causes.

Can it be prevented?

SUDEP is a rare condition and is the cause of approximately 10-17% of deaths in people with epilepsy. There is no way to prevent SUDEP 100% but by gaining better seizure control, particularly tonic clonic seizures, the risk is much lower. The reasons for SUDEP are not yet fully understood. Until further answers are found, the best way to prevent SUDEP is to lower your risk by controlling seizures.  Taking medication as prescribed, avoiding things that may trigger seizures and leading a healthy lifestyle can all help. People who may be at higher risk of SUDEP include:

      • People with poorly controlled epilepsy who have tonic clonic seizures.
      • People who are taking more than two antiepileptic medications
      • People who do not take their medications regularly and as prescribed.
      • People who stop medication without medical advice.
      • People who use illicit drugs and drink alcohol regularly.
      • People who have seizures during sleep.
      • Younger adults
      • People who have an intellectual disability.

Safety considerations If you have epilepsy, there are always sensible safety precautions you can take to prevent injury or a fatal outcome. Particularly if you are at risk for SUDEP you should think about changing some behaviours and a few things around the home. Our Seizure Smart – Safety Factsheet has some good suggestions. Other suggestions include:

      1. 1. Try to get the best possible seizure control. 100% seizure control is not always possible, but being diligent about taking your medications and leading a healthy lifestyle goes a long way to helping lessen seizures. If you are unhappy with your current seizure control or medication side-effects, speak to your doctor.
      2. 2.  Avoid your seizure triggers. Again, this is not always 100% possible, but say in the instance of stress, learn techniques that work best for you to manage stress. If alcohol or late nights are a trigger, the re-evaluate how much you drink and how you can still get a good nights sleep without missing out on social events.
      3. 3.  Think about where you have your seizures and how to have the safest possible environment. For SUDEP, this is particularly important if you live alone and have seizures in bed and during sleep. So if you sleep alone:
        1. Keep the surrounding area by your bed clear of sharp or hard objects so you don’t hit your head,
        2. Don’t use a heap of pillows to prop yourself up. People have suffocated when lying on more than one pillow. There are anti-suffocation pillows available that certainly would not do any harm and may prevent obstruction
        3. Maybe a safety alarm or device may be something to consider. There is only limited research on the benefits of monitors but they are worth discussing in relation to your own personal circumstances.
      4. 4.  There are many safety and alert devices and tools available now which may be useful for some people with epilepsy to help them stay safe when they have seizures. Contact us for more information on products available epilepsy@epilepsy.org.au or 1300 37 45 37

For more information go to:

EAA Factsheet – Seizure Smart: A question of risk

SUDEP Action – dedicated to support, inform and prevent SUDEP They provide an enormous amount of information on this topic and how it can affect you.

SUDEP Checklist for your doctor

SUDEP FAQ’s – Epilepsy Foundation USA

SUDEP – American Epilepsy Society

SUDEP Guidelines for doctors

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