Living with epilepsy

Epilepsy is a condition that causes recurring seizures. Seizures happen when there is too much electrical activity in your brain. This causes messages in your brain to become mixed up or stopped and can lead to changes in your movement, senses, memory, mood or level of consciousness.

Epilepsy is a condition that affects your brain and the messages it sends. Your brain has millions of nerve cells continuously passing electrical messages from cell to cell. This controls the way you think, move and experience the world around you.

If you have epilepsy, these electrical messages are disturbed and a sudden burst of electrical activity can cause a seizure.

The area of your brain where the electrical activity is disturbed, and how far that disturbance reaches, affects the kind of seizure you have. Seizures are sometimes called fits, attacks or convulsions.

Around 50 million people worldwide have epilepsy. It’s more common in children and people over the age of 60. Epilepsy is also more common in people who have a learning disability.

Not all seizures are caused by epilepsy. They can be caused by other conditions such as diabetes (low blood sugar levels) or abnormal heart rhythms. Very young children can also have seizures if they have an infection and a fever. These are called febrile convulsions.

Symptoms of epilepsy

The symptoms of epilepsy depend on the type of seizure you have. Seizures can be different for each person with epilepsy and you can have more than one type of seizure.

Seizures are divided into two main types. Focal (partial) seizures affect only part of your brain, whereas generalised seizures affect all of your brain.

Focal seizures

During a focal seizure, you may be alert and know what is happening (simple focal seizure) or you might be unaware of your seizure (complex focal seizure). Focal seizures can last a few seconds or a few minutes.

Seizures that affect the parts of your brain called the frontal lobe and the temporal lobe are common. Some of the main symptoms of seizures in these areas include:

• seeing, hearing or tasting things that aren’t there

• feeling strong emotions such as fear, panic or sadness

• having memory flashbacks

• being unaware of where you are or what is happening around you

• having problems speaking

• making strange body movements

• chewing, smacking your lips or swallowing

There are other types of focal seizures that can affect your vision, cause paralysis in part of your body or affect your senses. Sometimes, focal seizures can also spread further in your brain until they become generalised seizures.

Generalised seizures

Generalised seizures affect all or most of your brain and can happen without any warning. There are several different types of generalised seizure. The main ones are described below.

• Tonic-clonic seizures. These are also called grand mal seizures. During the first stage you lose consciousness and fall to the floor. Your muscles contract, your breathing may change and you may go blue. During the second stage, your muscles tighten and relax, which causes your body to jerk. After a short time the seizure usually ends and you become conscious.

• Absence seizures. These are sometimes called petit-mal seizures and are most common in children. You become unconscious for a short time and may look blank and stare or lose awareness of what is going on around you.

• Tonic seizures. These are when your muscles become rigid and if you’re standing up you may fall backwards.

• Atonic seizures. These are sometimes called drop attacks. The muscles in your body relax and you go floppy.

• Myoclonic seizures. These are when your muscles jerk. This can affect your whole body or just part of it.

Complications of epilepsy

Status epilepticus is a seizure or group of seizures that lasts for longer than 30 minutes, without you recovering and regaining consciousness. It can happen during any type of seizure.

However, if it happens during a tonic-clonic seizure, it can be very serious. If you’re with someone who has a tonic-clonic seizure that carries on for longer than five minutes you should call an ambulance.

During a seizure you can have an accident or injure yourself.

Sudden unexpected death in epilepsy (SUDEP) is when someone with epilepsy dies unexpectedly and there is no reason found for the death. However, this is very rare.

Causes of epilepsy

Some people have a known cause for their epilepsy. This is called symptomatic epilepsy. However, for most people with epilepsy, there is no known cause. This is called idiopathic epilepsy.

Causes of epilepsy include:

• a genetic (inherited) condition

• brain damage

• an infection in your brain (such as meningitis)

• a brain tumour, but this is rare

Diagnosis of epilepsy

A doctor will ask about your symptoms and examine you. He or she will also ask about your seizures, including what happens before, during and after.

Epilepsy can’t be diagnosed after just one seizure because it’s a condition that causes recurring seizures. Some people have a single epileptic seizure at some point in their life and then never have another one. Epilepsy can also be hard to diagnose because there is no single test that will diagnose it.

If your doctor thinks you may have epilepsy you will be referred to see to a neurologist (a doctor who specialises in conditions that affect the central nervous system, including the brain) for some tests. These may include:

• an electroencephalogram (EEG)

• a brain scan, such as an MRI scan or a CT scan

• blood tests

Please note that availability and use of specific tests may vary from country to country.

Treatment of epilepsy

There isn't a cure for epilepsy. The aim of treatment is to reduce the number of seizures you have or to stop them completely.

Self-help

Some people can identify things that trigger their seizures. Triggers can include:

• lack of sleep

• missing a dose of epilepsy medicine

• missing meals

• alcohol

• flashing or flickering lights – this is called photosensitive epilepsy

• stress

If you know that something triggers your seizures, you may be able to find ways of avoiding this to help control your epilepsy. Keeping a diary to record your seizures may help you to identify any triggers.

Medicines

Medicines can help to prevent seizures from happening, or reduce the number of seizures you have, by reducing the amount of electrical activity in your brain. Epilepsy medicines – or anti-epileptic drugs (AEDs) – can help prevent seizures in around eight out of 10 people.

These types of medicine can’t cure epilepsy and they can’t stop a seizure while it’s happening, however, there are some medicines that can be used to control a seizure. These include midazolam and anaesthetic medicines.

If you stop taking AEDs suddenly, your seizures may come back and may happen more often and for longer than they did before.

AEDs can cause side-effects, so your neurologist will start you on a small dose and increase it gradually. The side-effects often wear off after a few days or weeks, but if they don’t, speak to your neurologist. Always read the patient information leaflet that comes with your medicine and if you have any questions, speak to your doctor.

If you haven't had a seizure for two years or more, you may be able to gradually reduce the dose of your AEDs and eventually stop taking them. Ask your doctor for more advice.

Surgery

If you have severe epilepsy and your seizures haven’t been controlled with AEDs then your neurologist may suggest brain surgery to remove or separate the affected part of your brain. This may help to reduce or stop your seizures.

Vagus nerve stimulation can reduce the number of seizures you have as well as decreasing the length and severity of your seizures. This involves an operation to implant a small electrical device in your chest, which regularly stimulates a nerve in your neck called the vagus nerve. You may be offered this kind of treatment if medicines have not worked to control your seizures.

Ketogenic diet

The ketogenic diet is a treatment used for children who have epilepsy. It’s a high-fat, low-carbohydrate, controlled protein diet that leads to the production of a substance called ketones in the body. It's this high level of ketones that can affect your child's seizures.

This diet doesn’t work for every child. It should only be used under the supervision of your child's doctor and a dietitian.

Availability and use of different treatments may vary from country to country. Ask your doctor for advice on your treatment options.

Living with epilepsy

Living with epilepsy can sometimes be difficult, particularly if your seizures aren’t well controlled.

Having epilepsy may also mean making some changes to your day to day life. You may want to make changes to your home and workplace to keep yourself safe if you have a seizure.

If you have epilepsy, you may not be able to drive as there is a risk that you could have a seizure while driving.

For many people with epilepsy their condition doesn’t affect their work life. Your employer can’t refuse you a job because you have epilepsy, unless they have a good reason for doing so.