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 unconscious), muscle jerks, sudden falls, or jerking movements (while 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.
If you have epilepsy, you may feel OK about it, or you may have questions or worries. Your epilepsy and your choices in life may feel like big issues. This section looks briefly at what epilepsy is and treatment. We also look at sports and leisure, sex, drugs and social life. There's also information about school, college and university, driving and getting around, getting work, and how you might feel about your epilepsy.
You may want to look at some sections now, and other sections another time. Our confidential helpline can also give you more information on all of these topics.
Treatment for epilepsy
The most common treatment for epilepsy is anti-epileptic drugs (AEDs). AEDs aim to stop seizures happening, but they don't cure epilepsy. For AEDs to work well, it is important to take them regularly, at the same time every day.
You may adjust well to your AEDs, 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.
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 AEDs?
Doctors are not likely to prescribe AEDs 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 AEDs 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 AEDs you can talk to your doctor or specialist. They may be able to suggest a different AED 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.
Taken from our Your epilepsy - now and next leaflet. Order this leaflet from our online shop as part of our 'first five free' offer.
Epilepsy Society is grateful to Professor Matthias Koepp, Professor of Neurology, University College London and Epilepsy Society, and to the young people who helped develop this information.