Today is SUDEP Action Day. SUDEP stands for Sudden Unexpected Death in Epilepsy.

It is rare in adults and even rarer in children. To put it in context, anyone living with a long-term condition like diabetes or asthma has a slightly higher risk of sudden death, and this is no different with epilepsy.

This blog is raising awareness of SUDEP as we know that not everyone is aware of it, or has been told about it. It is never an easy subject to talk about, but an important one.

Have a look at some of the risk factors, see if they apply to you, and talk to your epilepsy specialist nurse if there is anything that concerns you. In many cases, steps can be taken to reduce risks.

What is SUDEP?

Unfortunately, a small number of people die from epilepsy each year in Scotland.

If there is an obvious cause of death, this is referred to as an epilepsy-related death, not SUDEP. This cause can be an injury resulting from a seizure-related accident, drowning, or status epilepticus.

Status epilepticus means a single seizure that does not stop by itself or a series of seizures without recovery in between. However, if there is no obvious cause of death, the term SUDEP is used.

SUDEP is often unwitnessed and happens overnight. In some cases, there may be signs that a seizure has happened, but in many cases, no signs of seizure activity can be found.

Who is at risk of SUDEP?

Generally, the better seizures are controlled, the less risk there is of SUDEP. Other risk factors are a person’s age, gender, and type of seizures.

So far, research has shown that:

• There is very little risk for anyone with absence seizures or myoclonic seizures only.

• Those who have tonic-clonic or focal seizures with limited awareness are at a slightly higher risk, particularly if seizures are frequent.

• SUDEP rarely happens in children.

• Studies show that children who have epilepsy as well as another condition affecting the brain (such as cerebral palsy or learning disability) have a slightly higher risk of SUDEP, but it is still very low.

• Young people, particularly young men in their late teens and early twenties, are at a slightly higher risk, especially if their seizures are not well controlled.

Other possible risk factors include:

• Having seizures at night or during sleep

• Having seizures when no-one is around to provide first aid

• Not taking AEDs as prescribed

• Abrupt changes in dose or type of AEDs

• Binge drinking or taking recreational drugs

• Infrequent reviews with an epilepsy specialist

Ways to minimise SUDEP risk

Anything that can reduce the number of seizures will usually also reduce the risk of SUDEP:

• Attend regular epilepsy reviews with your specialist. Also, find out and understand any specific risks associated with your type of seizures.

• Work with your specialist towards better seizure control. If you are no longer under the care of a consultant specialist, ask your GP to refer you back to a consultant who specialises in epilepsy.

• Keep a seizure diary, recording the type and frequency of seizures. Also, record any side effects from your anti-epileptic drugs (AEDs). All this information will help your specialist review your medication’s effectiveness.

• Identify and keep track of possible seizure triggers in a seizure diary. Address or seek help with seizure triggers, such as sleep issues, as this may help improve your seizure control.

• Avoid binge drinking or taking recreational drugs.

• Take your AEDs exactly as prescribed and aim to take them at the same time every day.

• Never make changes to or stop taking your AEDs unless advised and supervised by your specialist or epilepsy specialist nurse. Never skip your medication, even just for one day.

• Stay on the same brand or generic version of your AED, if possible. This may reduce the risk of breakthrough seizures as some people can be sensitive to a switch between different makes or generic versions of an AED.

If you want to find out more about SUDEP, please read our SUDEP factsheet for more information.

If you are concerned about anything you have read, or if you have been affected by SUDEP, please phone our helpline on 0808 800 2200 or contact SUDEP Action at www.sudep.org