SUDEP
Sudden Unexpected Death in Epilepsy

What is SUDEP?

SUDEP (Sudden Unexpected Death in Epilepsy) is a term used when a person with epilepsy suddenly dies and the reason for the death is not known. For example, it is not due to injury or to drowning following or during a seizure, and it is not due to a prolonged and severe seizure (status epilepticus).

What causes SUDEP?

The cause is not known. If a post mortem examination is done on a person who dies of SUDEP, no abnormality is found to account for the death. There are various theories as to why a person with epilepsy may die suddenly. One theory is that a seizure may affect a part of the brain that controls heart or breathing function, and so the heart and/or breathing just stop during a seizure.

How common is SUDEP?

The risk of SUDEP is small for most people with epilepsy. It is estimated to cause about 500 deaths per year in the UK. This sounds a lot, but when you compare it to the number of people who have epilepsy, it is quite rare. (Epilepsy is common. About 1 in 30 people in the UK develop epilepsy at some stage. Most people with epilepsy have a normal life span and do not die of SUDEP.) Of those who die from SUDEP, it is most common in people who have generalised tonic-clonic seizures, especially in young adults. The most important 'risk factors' seems to be poor seizure control, and seizures occurring during sleep.

• In people with severe epilepsy (frequent and severe tonic-clonic seizures), it is estimated that about 1 in 200 die of SUDEP each year.
• In people with mild idiopathic epilepsy (epilepsy of unknown cause), it is estimated that about 1 in 1000 die of SUDEP each year.
• In people who are in remission the risk of SUDEP seems to be negligible (very low). The term 'in remission' means that you have had seizures in the past, but have none or very few at present. This is either because of treatment, or because the epilepsy has settled down.

How can the risk of SUDEP can be minimized?

If you have epilepsy, it may be possible to reduce the small risk of dying from SUDEP by:

• Preventing seizures as much as possible. This is usually by medication. In some people, surgery is used to prevent seizures when medication has not been successful in preventing seizures. However, in some cases it is not possible to stop seizures fully. (See leaflet called Treatments for Epilepsy for details.)
• Being aware of the potential risk of night time seizures. Some people only have seizures at night when asleep (or have them more often at night.) As the risk of SUDEP is still present even for night time seizures, if possible, you should try to prevent these seizures as much as possible. This may mean a review of medication. But again, in some people it is not possible to prevent seizures fully.

Bereavement due to SUDEP

The sudden death of a loved one for any reason (such as due to SUDEP) is very upsetting and traumatic. If you have lost someone close due to this condition, it may be best to talk it through with your GP, or with the GP of the affected person. It is a tragic event where usually nothing could have been done to prevent it from happening. Some people find that it helps to get information and support from a support group, details of some are given below.

Further information

Epilepsy Bereaved
PO Box 112 Wantage D.O., Oxon, OX12 8XT
Bereavement Contact Line: 01235 772 852    Web: www.sudep.org
Epilepsy Bereaved was founded in 1993. It was established to support and inform individuals who have been directly affected by epilepsy and sudden death.

CRUSE (Bereavement Care)
Cruse House, 126 Sheen Road, Richmond, Surrey, TW9 1UR
Helpline/Information: 0870 167 1677    Web: www.crusebereavementcare.org.uk
Cruse Bereavement Care is the largest bereavement charity in the UK, with 150 local branches. It offers help to people bereaved by death, in any way, whatever their age, nationality or belief.

Compassionate Friends
53 North Street, Bristol, BS3 1EN
Helpline: 0845 123 2304    Web: www.tcf.org.uk
Offers its help to bereaved parents whose son or daughter (of any age, including adult) has died from any cause.

Epilepsy Action
New Anstey House, Gateway Drive, Leeds, LS19 7XY
Helpline: 0808 800 50 50    Web: www.epilepsy.org.uk

National Society For Epilepsy
Chesham Lane, Chalfont St Peter, Gerrards Cross, Bucks, SL9 0RJ
Helpline: 01494 601 400    Web: www.epilepsynse.org.uk

Epilepsy Scotland
48 Govan Road, Glasgow, Scotland, G51 1JL
Helpline: 0808 800 2 200    Web: www.epilepsyscotland.org.uk

Epilepsy Wales
PO Box 4168, Cardiff, CF14 0WZ
Helpline: 0845 7413774    Web: www.epilepsy-wales.co.uk

Other bereavement services and support groups
See a list of groups at www.patient.co.uk/display/16777249/

© EMIS and PIP 2005   Updated: September 2005   PRODIGY Validated