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Epilepsy facts and myths

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Epilepsy statistics

  • One in 20 people will have a one-off epileptic seizure at some point in their life (although this does not necessarily mean that they have epilepsy).
  • One in 50 people will have epilepsy at some time in their life (not everyone with epilepsy will have it for life).
  • Around 87 people are diagnosed with epilepsy every day.
  • Over 500,000 people in the UK have epilepsy. That’s about one in every 100 people. There are around 60 million people with epilepsy in the world.
  • Up to 3% of people with epilepsy will be affected by flashing lights (called photosensitive epilepsy), so most people with epilepsy do not have seizures triggered by flashing lights.

Did you know?

Did you know that Saint Valentine is the patron saint of people with epilepsy? Some famous people who have had epilepsy include the Roman Emperor Julius Caesar and the artist Vincent Van Gogh. More recently the actor Danny Glover, Rabbi Lionel Blue and rugby player Dean Ryan.

Diagnosis and treatment

  • Epilepsy can start at any age, but is most commonly diagnosed in people under 20 and people over 65. This is because some causes are more common in young people (such as difficulties at their birth, childhood infections or accidents) and in older people (such as strokes that lead to epilepsy). For some people their epilepsy might ‘go away’ and they stop having seizures. This is called spontaneous remission.
  • Epilepsy can be difficult to diagnose and there are a number of different tests that might be done to help with a diagnosis such as an EEG (Electroencephalogram) or an MRI (Magnetic Resonance Imaging) scan.
  • Epilepsy is usually treated with medication called anti-epileptic drugs (AEDs). AEDs aim to stop seizures from happening, but they do not cure epilepsy.
  • With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled (stopped).
  • The first AED used to treat epilepsy was phenobarbitone in 1912. There are now over 25 different AEDs available in the UK.
  • For people who do not have their seizures controlled with AEDs, surgery may be an option. This can involve removing the part of their brain that causes the seizures.

Diagnosing epilepsy

If there is a possibility that you have epilepsy, NICE recommends that you are referred to a specialist, (a doctor who is trained in diagnosing and treating epilepsy) within two weeks. Your diagnosis is based on finding out what happened to you before, during and after your seizures.

Vagus Nerve Stimulation

Vagus nerve stimulation therapy is a treatment for epilepsy that involves a stimulator (or 'pulse generator') which is connected, inside the body, to the left vagus nerve in the neck. The stimulator sends regular, mild electrical stimulations through this nerve to help calm down the irregular electrical brain activity that leads to seizures.

Epilepsy myths

Epilepsy is often misunderstood with different facts and myths surrounding the condition despite over 500,000 people in the UK having epilepsy. We want to dispel the many myths that still exist and bring you important information about seizures, seizure triggers and epilepsy first aid.

MYTH 1: You convulse (shake and jerk) when you have epilepsy

FACT 1: Not every seizure means a person jerks convulsively, nor is a person always unconscious during a seizure. Convulsions while unconscious are usually associated with tonic clonic seizures. There are a range of seizures which have different side effects and can affect people differently. 

MYTH 2: Flashing lights cause seizures in everyone with epilepsy

FACT 2: Around 1 in 100 people has epilepsy, and of these people, around 3% have photosensitive epilepsy. Photosensitive epilepsy is more common in children and young people (up to 5%) and is less commonly diagnosed after the age of 20. Triggers differ from person to person, but common triggers include a lack of sleep, stress, and alcohol. 

MYTH 3: You can restrain someone during a convulsive seizure and put your finger in their mouth

FACT 3: During a convulsive seizure you should never hold the person down or put anything in their mouth. It's important to know exactly what to do when someone has a tonic clonic seizure so that you can act quickly. 

MYTH 5: The only side effects of a seizure are tiredness and being confused

FACT 5: Having epilepsy can affect people in different ways. Knowing that a person ‘has epilepsy’ does not tell you very much about what happens for them or how epilepsy affects them. For example, some people may have problems with sleep or memory and for some people epilepsy may affect their mental health. 

Information produced: October 2018

Epileptic seizures

There are many different types of epileptic seizure. Any of us could potentially have a single epileptic seizure at some point in our lives. This is not the same as having epilepsy, which is a tendency to have seizures that start in the brain. 

Want to find out more?

Taken from our Did you know factsheet.