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SUDEP (Sudden unexpected death in epilepsy)

If a person with epilepsy dies suddenly and no obvious cause can be found after a post mortem examination, it is called SUDEP.

What causes SUDEP?

The actual cause of SUDEP is not known. Some studies have suggested that the part of the brain that controls breathing may be involved. Other studies indicate cardiac dysfunction. There may be no single explanation for all cases. It is impossible to predict who may be affected. There is a great need for further research on SUDEP.

Who is at risk of SUDEP?

Most people with epilepsy live a full life span.

Without a known cause, it is not feasible to accurately determine whether or not an individual may be predisposed to SUDEP. There is some suggestion, however, that some people may be more at risk than others. These may include people who:

  • have uncontrolled seizures
  • have generalised seizures during their sleep
  • are not taking their prescribed antiepileptic medication
  • are having frequent or sudden changes to their antiepileptic medication.

The risk of SUDEP for an adult with epilepsy is low, at one in 3000 persons over a one year period. However, for people with poorly controlled seizures, the risk is one in 100 persons over one year.

Reducing the risk of SUDEP

There are measures that you can take to try to reduce the risk of SUDEP.

Maximise seizure control. If your seizures are not well controlled, you could ask to be referred to an epilepsy specialist for your epilepsy and medication to be re-assessed. This would also give you the chance to discuss with your specialist whether any other treatment options would help to control your seizures.

Make sure that you never run out of your prescription medication and never make changes to, or stop your medication without talking to your doctor first.

Avoid known seizure triggers, especially sleep deprivation. Look after yourself – eat well, have adequate rest and exercise.

Talking about SUDEP

Both doctors and patients may find it difficult to discuss SUDEP. We encourage you to initiate a discussion with your specialist if he/she hasn’t raised it, to discuss why seizure control is important and how you can reduce the risks of SUDEP.

Links for more information

www.epilepsyaustralia.net.au/SUDEP/SUDEPaspx

www.sudep.org

www.epilepsyfoundation.org/epilepsyusa/

www.epilepsy.org.uk

SUDEP specific organisations

SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in epilepsy (SUDEP). Free tools, information and resources are provided to help keep people with epilepsy safe.
If you have been affected by an epilepsy-related death please contact the support team via support@sudep.org, or 01235 772852.
 
Information reviewed by Dr. Dan McLaughlin, Brisbane. Updated August 2018 To be reviewed August 2020

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