Sudden Unexpected Death in Epilepsy (SUDEP)

Introduction

We made the decision to write this information because we have been told, by the relatives and friends of people who died from SUDEP, that no one had ever told them that this could happen. By making this information available, we hope to raise people’s awareness of SUDEP, so that fewer people will be affected in the future. 

If you have any further questions after reading this, you could make an appointment with your doctor or epilepsy nurse to talk your concerns through. You are also welcome to speak with our trained advisers on the Epilepsy Helpline or to send an email to the helpline to discuss any concerns you have. 

What is Sudden Unexpected Death in Epilepsy (SUDEP)?

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

How common is SUDEP?

It is difficult to know exactly how many people with epilepsy die each year, but it is estimated that about 500 people a year die of SUDEP in the UK.

What causes SUDEP?

The true answer is, we don’t know. Some studies have suggested that the part of the brain that controls breathing may be affected. This could cause the person to stop breathing during a tonic-clonic seizure. For most people, the breathing would start again once the seizure ends. Unfortunately, this has not happened to the people who have died from SUDEP.

We don’t know yet whether these things happen because the person with epilepsy already has a weakness to their heart or lungs, or whether it is related to the epilepsy itself.

Who is at risk of SUDEP?

There is some suggestion that some people may be more at risk then others. These may be people who:

• have poor control of their seizures
• have generalised seizures during their sleep
• have a learning disability
• are young adult males
• are not taking their prescribed antiepileptic medication
• are having frequent or sudden changes to their antiepileptic medication.

Reducing the risk of SUDEP

The following suggestions may help you to reduce the risk of SUDEP.

• If your seizures are not well controlled, you could ask to be referred to an epilepsy specialist (secondary care – usually local) 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.

• Ask for a referral to a specialist epilepsy clinic (tertiary care – may be out of your area). Some specialist epilepsy centres take part in trials of new drugs.

• Make sure that you never run out of your prescription medication.

• Never make changes to or stop your medication without talking to your doctor first.

If you are close to a person with epilepsy, you may be able to reduce their risk of SUDEP by knowing that:

• many of the people who have died from SUDEP have been alone, although not everyone was. So, it would be good to stay with the person who is having a seizure for at least 15 or 20 minutes after the seizure has ended.

• Stimulating a person, for example moving their body or limbs can encourage breathing to restart. If you are caring for a person who has had a tonic-clonic seizure, put them on their side, in the recovery position, when the seizure is over. 

If you need support following the death of someone from SUDEP, you could contact one of the following organisations.

Epilepsy Bereaved
PO Box 112, Wantage, Oxon OX12 8XT
Tel: 01235 772 852 (A message can be left on the answer machine and a befriender will call back, or write.)
epilepsybereaved@dial.pipex.com

This is a charity set up by people who have been affected by SUDEP to offer support and information for other people affected by SUDEP. Epilepsy Bereaved takes part in research into the causes of SUDEP.

Compassionate Friends
53 North Street, Bristol BS3 1EN
Tel: 0845 123 2304
info@tcf.org.uk

This is self-help and befriending organisation of parents whose child, of any age, has died from any cause.

Cruse - Bereavement Care
Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR
Helpline: 0870 167 1677
Young person’s Helpline: 0808 808 1677
helpline@crusebereavementcare.org.uk

This is a counselling service run by trained people who help people with the emotional and practical problems of losing a relative or friend. They have a network of local branches.

Information updated December 2007