Sudden unexpected death in epilepsy (SUDEP)

SUDEP is a fatal complication of epilepsy and is defined by death with no obvious cause. The average of premature deaths is higher in people with epilepsy and the reason is still uncertain, although strongly linked to seizures, particularly tonic-clonic seizures.

One theory is that seizures can affect the heart rate or breathing rhythm of a person, which can be particularly dangerous, especially whilst sleeping.

Am I at risk of SUDEP?

If you have epilepsy, don’t panic, although SUDEP is a potential risk it’s impossible to quantify the exact incidence of SUDEP. You may be considered more at risk if you experience 3 or more tonic-clonic seizures per year.

See our guide to the different types of seizures here. 

There are other factors that can increase the risk of SUDEP. Alcohol and drug abuse are thought to be a factor that can increase the likelihood of SUDEP. Lack of a regular review, unwitnessed seizures and missing medication are other key factors. If any of these apply to you it’s important to address the issue and speak to your healthcare professional.

Reducing the risk of SUDEP

The key to minimising the chances of SUDEP is to reduce the number of seizures. It’s important to be disciplined with your medication and ensure you take it on time. Do not change the dosage of your medication, it’s important that all medication changes are done in conjunction with your healthcare professional. Ensure you don’t run out of your medication or forget to take your prescription. It’s worth asking your epilepsy nurse what to do if you can’t take your medication for any reason. It’s also considered that sleeping on your front/stomach (prone) can increase the risk of SUDEP, so where possible, try to sleep on your back or side.

Besides medication, you should also try to avoid seizure triggers and keep a diary of your seizures to ensure your healthcare professional can make the most informed choices on your treatment. You could also buy a safety pillow and mattress, that may reduce the risk of suffocation. Bed alarms are another option that can alert others if you have a seizure during the night, although these can be expensive and aren’t always accurate. There is no evidence to suggest how effective these devices are.

About National Epilepsy Training

At National Epilepsy Training, we provide a wide range of training and care services for people with epilepsy and those who manage people with epilepsy, including healthcare professionals, teachers and family members. For more information call us on 01706 373075 or email admin@nationalepilepsytraining.co.uk.