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 shake and jerk when you have epilepsy

FACT 1: Not every seizure means a person shakes and jerks, nor is a person always unconscious during a seizure. Shaking and jerking 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 tonic clonic seizure and put your finger in their mouth

FACT 3: During a tonic clonic 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 updated: January 2021
Source Epilepsy Foundation