[New Post] [OTHERS] Sudden unexpected death in epilepsy (SUDEP)

[OTHERS] Sudden unexpected death in epilepsy (SUDEP)

 

Why it's important to talk about SUDEP

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. This information is about one significant risk, and that is sudden death due to epilepsy.

It is important to remember that the risks of dying because of epilepsy are low. There are also things you can do to make the risks even lower.

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Many people who knew somebody who died due to SUDEP have told us they wished they had known more about the risks, before the person died. Therefore, the aim of this information is to raise awareness of the risk of sudden death associated with epilepsy. It also offers practical advice and suggestions on ways to reduce this risk.

There have been many studies carried out into SUDEP and research is continuing. However, SUDEP is still not fully understood by medical professionals. In this information, we can only tell you about the current understanding of SUDEP.

If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.

The definition of sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.

The causes of SUDEP

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SUDEP has been shown to be connected with seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.

Risk factors of SUDEP

It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected by SUDEP. However, some people with epilepsy have a higher risk of SUDEP than others. The single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure that causes the person to lose consciousness. Their body goes stiff and then starts jerking.

SUDEP has occurred in people who had seizures very often, and also in people who did not have them very often. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP if you are seizure-free is very, very low. And, SUDEP is rare in people who are newly diagnosed with epilepsy.

Any of the following things are thought to increase a person’s risk of SUDEP.

• Having uncontrolled generalised tonic-clonic seizures
• Not taking epilepsy medicines as prescribed
• Having seizures that are not controlled by epilepsy medicines
• Having sudden and frequent changes to epilepsy medicines
• Being a young adult (in particular male)
• Having sleep seizures
• Having seizures when alone
• Drinking large amounts of alcohol
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Ways to reduce the risks of SUDEP if you have epilepsy

Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible. If your seizures are not controlled, here are some ways that you can manage your epilepsy, to try and reduce them.

• Always take your epilepsy medicines as prescribed.
• Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
• Make sure that you never run out of your epilepsy medicines.
• Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
• If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.
• Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures, or anything that triggers your seizures.
• Avoid situations which may trigger your seizures. Common triggers include forgetting to take epilepsy medicines, lack of sleep, stress and too much alcohol.
• If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.

Epilepsy Action has more information about epilepsy medicines, surgery,seizure diaries and seizure triggers.

Other ways to reduce risk

• Some recent research suggests that people with epilepsy who sleep on their stomach may be at higher risk of SUDEP. This is compared with people with epilepsy who sleep in other positions. If you are able to, you might reduce your risk of SUDEP by not sleeping on your stomach
• If your seizures happen at night, consider using a bed alarm, which can alert another person if you have a seizure. This will enable the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)

For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.

Tel: 0300 999 0004 (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk

The Disabled Living Foundation's website is called Living made Easy.

Telecare (alarms linked to a help centre)
Website: livingmadeeasy.org.uk/telecare

Bed alarms
Website: livingmadeeasy.org.uk/bedroom

• Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy.
• Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do. For example, you may choose to live with other people.
• Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research that proves this. If you think an anti-suffocation pillow would help you, please talk to your epilepsy nurse or epilepsy specialist. They will help you to decide whether an anti-suffocation pillow would be a good idea for you.
  For details of where you can buy anti-suffocation pillows, contact Epilepsy Action.

Epilepsy Action has more information about safety and epilepsy, identity jewellery and epilepsy awareness cards.

Ways to reduce the risks of SUDEP for someone who is having a seizure

You may be with someone when they have a seizure which causes them to lose consciousness. Here are some things you can do to help them recover. Your actions may also reduce the risks of SUDEP.

Remember ACTION for tonic-clonic seizures:

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