What is SUDEP?

Tragically, approximately 1000 people die every year from epilepsy in the UK. Some of these deaths will be as a result of a seizure, usually status epilepticus, a seizure that doesn't end of it's own accord, or through and accident or injury caused by a seizure. Then there are those who die due to SUDEP.

Sudden unexpected death in epilepsy (SUDEP) 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.

 

SUDEP Risk Factors

  • 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. The below steps can be taken to reduce the risk of SUDEP: 

  • Be consistent with your medication
  • Avoid seizure triggers if these are known
  • Avoiding drinking too much alcohol
  • Ensure other people in your house are trained in seizure first aid
  • Try to make sure you are getting enough sleep
  • Keep a diary of when seizures occur

 

Don't Feel Alone

If you're worried or concerned about the risk of SUDEP, please talk to someone. You can contact the Young Epilepsy Helpline or speak to our friends at SUDEP Action.

Have you heard of EpSMon?

EpSMon is a self monitoring app that is designed for adults who experience seizures. 

Find out more

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