Introduction to epilepsy

An introduction to epilepsy and treatment for young people.

What is epilepsy?

Epilepsy is the tendency to have seizures that start in the brain. The brain uses electrical signals to pass messages between brain cells. If these signals are disrupted, this can lead to a seizure.

Epilepsy is usually diagnosed when someone has had more than one seizure. Seizures can affect your feelings, awareness, or movement. Different types of seizures involve different things. These may include confusion, strange feelings, repetitive movements, 'blank' moments (where you are briefly unresponsive), muscle jerks, sudden falls, or jerking movements (while you are unconscious).

Sometimes other conditions can look like an epileptic seizure, for example fainting. Doctors will check for other conditions as well as epilepsy before you are diagnosed. See more about diagnosis and epileptic seizures.

Treatment for epilepsy

The most common treatment for epilepsy is anti-seizure medication (ASM). ASM aims to stop seizures happening, but it doesn't cure epilepsy. For ASM to work well, it is important to take it regularly, at the same time every day.

You may adjust well to your ASM, or you may have side effects, like feeling tired or unsteady. Some side effects go away once your body gets used to the drug. If you have concerns about side effects you can talk to your doctor about this.

Are you taking, or have taken, the epilepsy drug sodium valproate? New guidelines have been introduced by the Medicines and Healthcare products Regulatory Agency (MHRA) around the way in which the drug, sodium valproate is prescribed to people under the age of 55. 

It's my treatment, but who's in charge?

How you get on with the doctors you see for your epilepsy can make a big difference to how you feel about your treatment. Asking questions or making decisions about your treatment with your doctor can help you feel more involved.

At around age 16 to 18, you may start seeing a specialist for adults, usually a neurologist. This is called 'transition' and it can be a good time for you and your new specialist to talk about your epilepsy, and adjust your treatment if necessary.

Do I really need ASM?

Doctors are not likely to prescribe ASM unless they feel you need them. Although many people can have a seizure and be fine afterwards, having seizures can be risky. Seizures can really disrupt someone's life; they can cause injuries and in some rare cases it is possible to die from a seizure.

This sounds very scary but for most people with epilepsy, the risk of dying from a seizure is very low. Taking ASM regularly can help to stop seizures happening, or reduce the number of seizures to keep this risk low.

If you are unhappy about taking your ASM you can talk to your doctor or specialist. They may be able to suggest a different ASM or change the dose. They may also be able to tell you more about any possible risks around your specific epilepsy so you and your family can keep the risks of having seizures in perspective and not worry unnecessarily.

Epilepsy Society is grateful to Dr F J Rugg-Gunn Consultant Neurologist & Honorary Associate Professor, Clinical Lead, Chalfont Centre for Epilepsy, who reviewed this information.

Information updated: November 2023