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Epilepsy Symptoms and Related Risks

Are Epilepsy Seizures Dangerous?

A person is most at risk of injury if doing something potentially dangerous when a seizure occurs.

Your doctor will recommend guidelines in relation to driving, the use of dangerous machinery, working above ground level and activities such as scuba diving.

Ensuring your seizures are correctly diagnosed, your treatment plan is followed and first-aid information is available will minimise your risks.

Is there a Risk of Dying From Epilepsy?

You may hear about a phenomenon called SUDEP [Sudden Unexpected Death in Epilepsy]. SUDEP is when a person with epilepsy, who is otherwise healthy, dies suddenly and prematurely and no reason for death is found. Deaths attributed to SUDEP often happen at night and often go unwitnessed but there are often signs that a recent seizure has occurred.

Overall, the incidence of SUDEP in the general epilepsy population has been reported to be as high as 1.2 per 1000 persons per year in the general epilepsy population. Based on the estimated 142,740 people living with active epilepsy in Australia, this would equate to approximately 171 SUDEP-related deaths per year across the general epilepsy population (The Economic Burden of Epilepsy in Australia 2019-2020; Deloitte Access Economics). 

The cause of SUDEP is still not fully understood but researchers are investigating a number of possible mechanisms, including changes in heart functioning and breathing.

Risk for SUDEP is increased for those people with epilepsy who have:

  • Generalised tonic-clonic seizures (GTCS)
  • Seizures at night
  • Frequent seizures

– Risk of SUDEP increases 15x if a person experiences 3 or more GTCS per month.

– The risk of SUDEP decreases 7x when a person’s seizures are better controlled.

  • Abrupt and frequent changes of medication in people whose seizures are not well controlled
  • Not taking medication as prescribed
  • Alcohol or substance misuse
  • Depression or psychiatric illness

Risk levels vary between people with epilepsy and can change over time. It is very important to discuss your individual risk factors with your treating neurologist or epileptologist. Effective treatment of seizures is typically the best method of reducing risk.

To help minimise the risk of SUDEP:

  • Ensure seizures are correctly diagnosed
  • Have regular medical reviews of your epilepsy
  • Learn about your epilepsy
  • Tell your doctor if you are having seizures
  • Follow Treatment plans/take medications as prescribed at the same time each day and ask for advice if you are having unpleasant side effects
  • Identify and avoid seizure triggers, such as lack of sleep or excessive alcohol
  • Carry out a full risk assessment of your home and work environment
  • Give accurate epilepsy first aid information to those who might care for you – consider the use of an Epilepsy Management Plan and a Seizure Diary.

Epilepsy Tasmania can help individuals, families, workplaces and schools to create Epilepsy Management Plans and Emergency Medication Managment Plans to help manage seizures.

If you or someone you know has suffered a bereavement as a result of SUDEP, our staff or Lifeline and Beyond Blue are available for support.