It can be scary to think about the risk of death because of epilepsy. If you know the risk exists, you can take positive action to keep the risk as low a possible.
- People with epilepsy have a higher risk of early death than people without epilepsy
- Epilepsy-related deaths can be caused by many things: accidents, drowning, status epilepticus, suicide and sudden unexpected death in epilepsy
- Sudden unexpected death in epilepsy (SUDEP) is when a person with epilepsy dies suddenly and no other cause of death is found
- The reasons that SUDEP happens are not fully understood
SUDEP is rare, but for some people the risk is higher.
The risk of SUDEP is higher for people who:
1Have frequent tonic-clonic seizures
2Have seizures when sleeping
3Are not taking their epilepsy medicine as prescribed
4Have seizures when they are on their own
1 in 1,000 adults with epilepsy die from SUDEP each year
Top tips for reducing the risk
- Take your epilepsy medicine(s) every day, exactly as prescribed
- Find out what to do if you miss a dose of medicine, vomit or have diarrhoea after taking it
- Try to avoid situations which may trigger your seizures – see the page on seizure triggers
- If your seizures are not fully controlled, ask for a review of your epilepsy treatment
- Your epilepsy doctor may be able to suggest changes to your epilepsy medicines, or other treatment options
- Tell people what to do and how to help you if you are at risk of status epilepticus
- Look after yourself – keep fit and well, look after your mental health
- Do what you can to stay safe. There are suggestions on the page about safety
- You might choose to not live alone, or use an alarm system that can send an alert if you have a seizure
- Seek help if you are feeling depressed or suicidal
Looking for help right now?
These services can be contacted 24 hours a day, 7 days a week.
Call 116 123
Whatever you’re going through, the Samaritans can be contacted for free at anytime.
Text SHOUT to 85258
Shout is a free 24/7 text service for anyone in crisis anytime, anywhere.
Have you ever talked to your epilepsy doctor or nurse about SUDEP?
If not, why not talk to them at your next appointment about your level of risk and anything you can do to reduce the risk.