SUDEP

Sudden Unexplained Death in Epilepsy (SUDEP)

What is SUDEP?

SUDEP (Sudden Unexpected Death in Epilepsy) is defined as an unexplained or unexpected death in a person with epilepsy where no clear cause of death is determinable after a postmortem examination. This may be with or without evidence of a seizure.

This does not include those who die in status epilepticus and those who die from a seizure-related accident.

In general, the risk of SUDEP for an adult with epilepsy is low, at one in 1,000 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 in 4,500 over one year.

To date 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.

However, over the years some possible risk factors have been suggested including:

SUDEP Risk Factors

  • Uncontrolled or frequent seizures
  • Tonic-clonic seizures, particularly if these happen at night or during sleep
  • Frequent seizure activity
  • Seizures that begin at a young age
  • Many years of living with epilepsy
  • Missed doses of medication
  • Drinking alcohol or taking illicit drugs

Yet risk factors only tell part of the story. Sometimes individuals with infrequent seizures pass away, while others with more frequent and apparently more severe seizures do not. Some may be more at risk because of social factors, lifestyle or sub-optimal management; others may have additional biological susceptibility.

Reducing risk

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 quite 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, and that the unknown category of seizure frequency, that where seizure frequency is not known or disclosed, showed the strongest association with risk of SUDEP of all seizure-frequency groups.

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.

  • Speak to your Doctor about the risk of SUDEP
  • Take your AED as prescribed
  • Avoid triggers, if known
  • Get adequate sleep
  • Avoid drinking too much alcohol or taking illicit drugs
  • Learn how to best manage your seizures through information, speaking to doctors and seeking support
  • Ensure that your family and carers are trained in seizure first aid

For more information on epilepsy and risks please click here for the Epilepsy Australia information page or for assistance please call 1300 852 853

Talk to your Doctor

If you are concerned about SUDEP, whether that is for yourself or someone you care for, it is a good idea to talk to your doctor. This will provide you with a chance to talk about risks and ways of lowering these in relation to SUDEP.

When talking to your doctor about SUDEP, you may want to discuss the following:

  • What is my risk for SUDEP?
  • What can I do to reduce my risk?
  • What should I do if I forget to take my AED?
  • Would a change in medication assist me to gain better seizure control?
  • Are there any activities I should avoid?
  • How should I speak to my family and friends about SUDEP?

Getting Support

Epilepsy ACT is here to assist and counsel anyone who has lost a loved one to SUDEP, or any other epilepsy-related deaths. Please feel free to contact us for confidential support.

You may also want to consider talking to your doctor or another healthcare professional. External crisis counselling and support can be found through:

Beyond Blue – 1300 22 46 36

Lifeline – 13 11 14

Kids Helpline – 1800 55 1800

SUDEP Research

SUDEP Action are a UK based organisation focused on providing information on SUDEP and sponsoring research to prevent further deaths.   SUDEP Action also manage the international Epilepsy Death Register which gathers information about epilepsy-related deaths so that more can be learned and risks can be reduced.  If you have lost a loved one you may want to consider sharing information in the Epilepsy Death Register.

SUDEP Action Day

SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy deaths worldwide.

It occurs annually on the third Wednesday in October, this year will be on
Wednesday 19 October 2022.

Launched by SUDEP Action on 23 October 2014 (as SUDEP Awareness Day), it shines a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness, research and taking action to reduce epilepsy and SUDEP risks.

Join us for SUDEP Action Day 2022 – #TalkSudepNow

Not everyone with epilepsy is aware of or told about SUDEP (Sudden Unexpected Death In Epilepsy) and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

It is time to change this. So that every person with epilepsy, their families and health professional are not only aware of these risks (which can lead to death if ignored) but are able to take an active role in discussing, reviewing and reducing them.

With information there’s conversation. As a growing community we need to #TalkSudepNow and raise much needed awareness which could help people with epilepsy around the world live safely and help save lives!

For more information please click here or head to: sudepactionday.org

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