Information on Epilepsy
This page aims to give you some basic information about epilepsy, and point out where you can get more detailed information.
The brain is a complex structure made up of millions of nerve cells (called neurones). It controls a wide range of tasks such as consciousness, awareness, movement, and posture. The brain sends and receives messages to make these tasks happen. If there is a mistake sending or receiving messages, a brief break in some or all of the brain’s tasks can happen. If this happens a person may have a seizure.
Epilepsy is a physical condition that starts in the brain (a neurological condition). It is a sign that the way a person’s brain works is sometimes disrupted. When this happens, a person may suddenly have a seizure. Many people will have a single seizure at some time in their lives, but this does not mean that they have epilepsy. If a person has epilepsy it means they have had more than one seizure beginning in the brain.
Epilepsy is the most common serious neurological condition in the world. 1 in every 131 people in the UK have epilepsy. This means that there are at least 456,000 people with epilepsy in the UK.
Anyone can develop epilepsy; it occurs in all ages, races and social classes. The reasons why some people develop epilepsy are not straightforward and there are many possible causes. Whatever the reason, a person’s seizure threshold will play a key role.
The causes of epilepsy can be put into three different groups. Each group includes a number of different types of seizure.
When there is a known cause for a person’s epilepsy starting it is called symptomatic epilepsy. The causes can include head injury; nfections of the brain such as meningitis; a stroke; or because of a scar on the brain. Images from scans of the brain may show what the cause is. The response to drug treatment can vary from person to person.
In this type of epilepsy, there is no clear cause for the seizures suddenly starting. It is thought having a low seizure threshold could be the reason (see below). The response to epilepsy drug treatment is usually good.
When a known cause for a person’s epilepsy starting cannot be proved, but one is suspected, a person may be told that they have cryptogenic epilepsy.
The seizure threshold is our individual level of resistance to seizures. We all have a seizure threshold and any of us can have a seizure if the circumstances are right.
The seizure threshold is part of everyone’s genetic make up (how we each inherit our characteristics) which is passed from parent to child. The chance of you developing epilepsy depends on the seizure threshold of both your parents.
If you have a low seizure threshold you are more likely to start having seizures suddenly for no obvious reason. However, an outside factor (for example a head injury) could also cause a person with a low seizure threshold to start having seizures. But because of the low seizure threshold the event could seem minor and still result in seizures happening.
If you have a high seizure threshold you are less likely to start having seizures suddenly. Seizures are more likely to begin as a result of an outside factor, for example if you have had a severe head injury.
Because there is no obvious sign a person has epilepsy, unless they are having a seizure, it can make diagnosing epilepsy difficult. A diagnosis is usually made after a person has had more than one epileptic seizure. When a person has had a seizure they may not remember what happened, so it can be helpful to have information from someone who saw the seizure happening.
A number of investigations, including blood tests, an Electroencephalogram (EEG) and scans such as Computerised Tomography (CT) or Magnetic Resonance Imaging (MRI) may provide additional information. However, these tests cannot confirm or rule out a diagnosis of epilepsy.
Epilepsy may take many forms and just knowing that a person ‘has epilepsy’ tells you very little information about someone’s epilepsy and the type of seizures they have.
Anti-epileptic drugs – AEDs
Up to 70% of people with epilepsy could have their epilepsy controlled with anti-epileptic drugs (AEDs). AEDs aim to prevent seizures from happening, but don’t cure epilepsy. There are many kinds of AEDs, and the AED that someone takes will depend on the type of seizures they have.
In some people the tendency to have seizures decreases with time and they may be able to stop taking their AEDs. Other people may need to continue taking AEDs for the long-term even if their seizures have stopped. This may happen if the underlying cause of the seizures, for example a scar on the brain, is still there.
Some people may not get full control of their epilepsy, even though they may have had the most suitable treatment for their type of seizures.
There are other ways to treat epilepsy if a person doesn’t respond well to AEDs, but they are not suitable for everyone.
A small number of people may benefit from having brain surgery (also called neurosurgery or epilepsy surgery). Surgery is only considered in people whose seizures happen in only one area of their brain.
Vagus nerve stimulation – VNS
VNS is a relatively new type of treatment for epilepsy. It aims to reduce the number, length and severity of seizures a person has. It involves a mild electrical stimulation of the left vagus nerve, a large nerve in the neck. VNS doesn’t cure epilepsy and usually a person would continue taking their AEDs.
For some people certain situations, known as triggers, can bring a seizure on. Common triggers include: lack of sleep, too much alcohol, stress or missing medication. Avoiding situations that can act as a trigger can help reduce seizures for some people.
Having seizures for the first time, or being told that “you have epilepsy”, can affect us in different ways. Often people know very little about epilepsy or have misunderstandings about it, which sometimes makes the diagnosis hard to come to terms with.
Talking about any worries, asking questions and getting information about epilepsy might help you deal with any concerns you (or your family and friends) may have.
If your seizures are controlled then epilepsy may not stop you from leading a full and active life. But if you continue having seizures, you might want to think about extra safety measures to reduce your risk of injury. For example if your seizures make you fall over you could consider fitting a stair guard at home. These kind of changes will usually be different from person to person and should be based on how each person’s epilepsy affects them.
If you’re supporting or caring for someone with epilepsy you might want to think about ways to emphasise their abilities rather than focusing on any negative impacts of their epilepsy. This helps to keep their epilepsy in perspective and makes it easier to avoid making unnecessary restrictions to their lifestyle.
Taking care of your overall wellbeing is a vital part of living with epilepsy. For some people having information or support can help them handle how epilepsy might be affecting their life. There are also local epilepsy support groups around the UK that give people the opportunity to meet other people who have epilepsy.
Getting accurate information and finding support can be just as important if you care for or live with someone who has epilepsy.