SUDEP

What is SUDEP?

Most people with epilepsy live full and active lives. However, there is a slightly higher risk of death due to accidents, suicide and other medical conditions than in people who don’t have epilepsy. Sometimes, death appears to be directly related to epilepsy itself. This is referred to as sudden unexpected death in epilepsy (SUDEP).

In the UK, there are around 456,000 people with epilepsy. It’s estimated that about 500 people die of SUDEP each year. Some research suggests that young adults, particularly male, might be at a slightly higher risk than other people with epilepsy. Other risk factors include poor seizure control, generalised seizures happening in your sleep and not taking anti-epileptic drugs exactly as prescribed by your doctor.

What causes SUDEP?

No one really knows what causes SUDEP. Some studies suggest that part of the brain that controls breathing might be affected during a tonic-clonic seizure and stop the person’s breathing. Usually, breathing starts again once the seizure stops. Unfortunately, this has not happened to people who have died from SUDEP. It’s not known if this is because the person already has a weakness to their heart or lungs, or whether it is related to the epilepsy itself.

How can I reduce the risks?

Here are some suggestions to help you reduce the risk of SUDEP.

• If your seizures aren’t well controlled, ask your family doctor to refer you to see an epilepsy specialist, who can reassess your epilepsy and anti-epileptic drugs (AEDs). Ask the specialist whether any other treatment options would help to control your seizures, for example a vagus nerve stimulator.
  
• Ask for a referral to a specialist epilepsy clinic. Some of these take part in trials of new drugs, which might benefit you if you’ve already tried several drugs on the market.
  
• Make sure that you never run out of your AEDs.
  
• Never make changes to or stop your AEDs without talking to your family doctor or epilepsy specialist first.
  

Ask anyone who might be with you when you have a tonic-clonic seizure to put you on your side, in the recovery position and to stay with you for at least 15 or 20 minutes after the seizure has ended. Alternatively, carry an ID card which has first-aid instructions on it (available free of charge from our on-line shop), so that a passer-by knows what to do.   

Where can I get more advice about SUDEP?

If you want more information about SUDEP, or want to speak to someone about this, contact the freephone Epilepsy Helpline, tel. 0808 800 5050 (UK only). Alternatively send an email to helpline@epilepsy.org.uk. The advisers can give you details of support services and a SUDEP counselling service.

November 2008

More in this section:

• Introduction
• What is epilepsy?  
• Living with epilepsy
• Treatment
• Visiting your doctor
• Sex and sexuality
• Becoming a father
• SUDEP
• Support