SUDEP: Sudden unexpected death in epilepsy

The causes of SUDEP are not yet fully understood. The most common explanation is that a part of the brain that regulates breathing (in the brain stem) stops working properly during an epileptic seizure, and then the person stops breathing. We usually have a reflex that makes us wake up if we stop breathing. But this reflex is thought to be impaired in those people affected. This leads to a severe lack of oxygen and, as a result, to cardiac arrest (where the heart stops pumping blood).

In rare cases, SUDEP can occur without there being a noticeable seizure beforehand.

The following things can increase this risk:

• Generalized (bilateral) tonic-clonic seizures. This is a type of epileptic seizure that affects all of the brain, leading to loss of consciousness and convulsions throughout the whole body. In rare cases, this kind of seizure can lead to respiratory arrest (where you stop breathing) and then SUDEP.
• If you suddenly stop using your epilepsy medication, or don’t use it regularly
• Difficult-to-treat epilepsy with frequent seizures
• Frequent seizures at night
• Certain severe types of epilepsy caused by a genetic disorder (such as Dravet syndrome)
• Sleeping on your front

People who live alone also have a higher risk of SUDEP. This is because nobody would notice if they had a seizure at night, so nobody could help in an emergency.

Anything that reduces the risk of seizures also reduces the risk of SUDEP. This means that good, individually tailored treatment is the best form of prevention – even though nothing can guarantee that SUDEP won’t occur. Doctors can help to assess your personal risk, let you know how to best treat your epilepsy, and give you advice on how to reduce your risk in daily life. It is also important to monitor the disease closely and recognize when seizures occur. Keeping a seizure diary can help here – allowing you to note exactly when you had a seizure, and which type.

It is important to consult a doctor who specializes in epilepsy, particularly if the seizures become more frequent or more severe. Then the treatment may need to be adjusted.

Possible measures to reduce the risk of seizures (and the risk of SUDEP) include

• taking the epilepsy medication regularly as prescribed,
• having your medication adjusted if you start having seizures more often,
• avoiding things that may trigger seizures (like alcohol, drugs, or a lack of sleep), and
• following a low-carbohydrate, high-fat diet (known as a ketogenic diet).

Surgery may be considered in people who still have frequent, severe seizures despite taking medication. It involves removing the part of the brain that is responsible for the seizures. This operation can greatly reduce the risk of seizures. Another option is to implant a pacemaker in the chest area in order to reduce the activity of certain nerve cells. This is known as vagus nerve stimulation.

The risk of SUDEP is higher in people who have tonic-clonic seizures while they’re asleep. But these seizures often go unnoticed. It is important to recognize when they happen so that other people can react quickly. This can also help doctors to adjust the treatment.

One thing you can do is use seizure-detection devices at night. Some of these devices can be worn during the day, too. There are various types – mainly bracelets and mattresses with sensors in them. These pick up the typical movements that occur during a severe seizure, and some monitor your breathing or heart rate too. The devices can recognize when someone has a seizure and then alert people who are nearby. The suitability of this option will depend on your living arrangements, the frequency and severity of seizures, and whether you can easily handle the device. Sometimes the devices lead to false alarms that disturb your sleep. If a seizure-detection device is prescribed by a doctor, you can apply to your health insurance provider and ask to have the costs covered. Before choosing a device, it’s important to get enough information – for example, from the manufacturers, other people who have used the devices, or from your doctor’s practice. You will find information about these and other kinds of medical aids in Germany on the REHADAT website.

You can also consider sharing a bedroom with someone close to you, or sleeping in a bedroom near to theirs with your bedroom doors open, so that they can quickly help you if necessary.

If someone has a major epileptic seizure, it’s important to

• prevent injury (for example, by putting a pillow under their head and moving any dangerous objects out of the way) and
• keep their airways free (by loosening any tight clothing around their neck, for instance – but don’t open their mouth).

Tonic-clonic seizures usually last about 2 to 3 minutes. Once the seizure is over, it’s important to

• turn the person on their side (in the recovery position),
• stay with them,
• talk to them and touch them as soon as the seizure has ended, and
• check their breathing and pulse regularly until they are fully conscious again.

If they stop breathing and their heart stops beating, it’s very important to start resuscitation as soon as possible and call the emergency services (112 in Germany and many other countries, 911 in the U.S.). To learn how to recognize whether a person is still breathing and their heart is still beating, you can do a first aid course that also shows you how to resuscitate someone.

It can be useful to draw up an emergency plan together with a doctor. The plan should describe how people can help in an emergency.