Living with epilepsy

We interviewed members and volunteers from across the UK about their experiences of living with epilepsy. Listen to their stories below to find out what living with the condition is actually like.

Epilepsy affects everyone in different ways. Many people have their seizures controlled by epilepsy medicines or other treatments, such as surgery and vagus nerve stimulation. But some people continue having seizures, even though they have tried different medicines and other treatments.

Epilepsy can have a major impact on everyday life. You may lose your driving licence or your job. You may also have to deal with unfair treatment from other people. This is often because other people don’t know much about the condition.

All of the stories below are people’s personal accounts of living with epilepsy. You can also watch our short animated films.

Epileptic seizures

If you have epilepsy, it means you have had more than one epileptic seizure, and could have more in the future.

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden and intense burst of this electrical activity. This causes a temporary disruption to the way the brain normally works and the brain’s messages become mixed up.

There are around 40 different types of seizure, each with different symptoms. What happens to you depends on where the activity happens in your brain. Some people fall down and shake, and other people experience strange movements or sensations.

Each person with epilepsy will experience their seizures in a way that is unique to them.

Seizures

Seizures: Amanda’s story

Seizures: Christina’s story

Seizures: Vanessa’s story

Seizures: Ian’s story

Seizure triggers

Diagnosis

Every day, around 87 people in the UK are newly diagnosed with epilepsy. Anybody can be diagnosed with the condition, at any age.

Diagnosis: Robin’s story

Diagnosis: Vanessa’s story

Diagnosis: Christina’s story

Diagnosis: Amanda’s story

Treatment

Epilepsy is most commonly treated with epilepsy medicines. Epilepsy medicines do not cure epilepsy. Instead, they try and stop seizures from happening.

Other treatments for adults with epilepsy are brain surgery, vagus nerve stimulation, and deep brain stimulation.

Brain surgery: Sean’s story

Brain surgery: Vanessa’s story

VNS: Tracey’s story

Education and employment

Some people find that epilepsy has an impact on their education, or when they are at work. Issues can include health and safety and having to deal with discrimination.

Education: Christina’s story

Education

Work: James’s story

Work

Family and relationships

Epilepsy can have an impact on personal relationships and family life. Some people with epilepsy feel that family and friends treat them differently. Other people worry that their epilepsy will have an effect on their ability to start a family.

Coping: Graham’s story

Family: Vanessa’s story

Starting a family

Marriage: Clive’s story

Coping with epilepsy

If you have been diagnosed with epilepsy, you may need some time to come to terms with it. It can be difficult to adjust to the changes, such as losing your driving licence or having to do things differently at work. Epilepsy can also have an impact on your emotional wellbeing.

Depression: Robin’s story

The advice I’d give…

Stigma

Epilepsy and memory

Many people with epilepsy report that they have memory problems. Memory problems can have a big impact on everyday life and wellbeing.

Memory: Robin’s story

Memory: Barbara’s story

Quick links

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