What is SUDEP?

The cause of SUDEP is unclear and not well understood. Research is ongoing with some studies suggesting the part of the brain that controls breathing may have a role. Other studies suggest the possibility of problems with the function of the heart and brain. It may be that there is no single cause, but a combination of factors.

Presently, it is not possible to predict who may be affected by SUDEP. Many people with epilepsy live full life spans, although it is known that people with epilepsy have an increased risk of death compared to the general population. Without a known cause, it is not possible to accurately determine whether a person may be predisposed to SUDEP, however, it seems some people may be more at risk than others.

This may include people who:

• have uncontrolled seizures;
• have generalised seizures during their sleep;
• have frequent tonic-clonic seizures;
• are not taking their prescribed antiepileptic medication;
• are having frequent or sudden changes to their antiepileptic medication.

There are measures you can take to try and reduce your risk of SUDEP. Maximising seizure control if possible, is very important. You should also:

• Ensure you never run out of seizure medication;
• Never make changes to, or stop medication without speaking to your doctor first;
• Avoid known seizure triggers- especially sleep deprivation;
• Look after yourself: eat well, have adequate rest and exercise;
• Talk with your family and friends about SUDEP, and consider telling colleagues about your epilepsy.