Sudden unexpected death in epilepsy (SUDEP) is extremely rare and affects only around 500 people in Britain every year. More people die from falling down the stairs than they do from SUDEP.
Although little is known about SUDEP, research has shown that it is usually associated with a tonic clonic seizure, as part of the brain that controls respiration may be affected, causing breathing to stop.
There are certain factors which can increase the risk of SUDEP:
- Having generalised tonic-clonic seizures
- Having poorly controlled seizures
- Having seizures at night or in bed
- Having seizures when on your own
- Frequent and abrupt changes to medication
- Not taking medication as prescribed
- Drinking lots of alcohol
Research has shown there is a higher incidence of SUDEP in men.
Reducing the risk of SUDEP
The best way is to try to minimise the number of seizures by taking medication as prescribed, but also by explaining to friends and family what to do if you have a seizure; avoiding specific seizure triggers and looking at your living options if you're moving out of home.
SUDEP is very rare and extremely unlikely to happen to you, however it is important that you are aware of it and that you look after yourself or your child.