Patient information from BMJ

Epilepsy: what is it?

Last published:Nov 28, 2019

Epilepsy is a serious condition that causes people to have seizures (fits). But there are medicines that work well to keep it under control. With treatment, most people get fewer seizures or none at all.

What is it?

If you or your child has epilepsy the normal electrical activity in the brain gets disturbed from time to time. This leads to seizures.

A seizure affects how your brain works. What happens to you during a seizure depends on the part of the brain that is affected. During a seizure you may feel strange and your body might move in odd ways. Your muscles may go limp or stiff, and you may shake, twitch, or black out. But seizures tend to be over quickly.

Seizures can affect nerve cells in one particular part of your brain. These are called partial seizures (sometimes called focal seizures). Or they can affect nerve cells all over your brain. These are called generalised seizures.

Your doctor may not be able to tell you why you or your child has epilepsy. About 70 in 100 people with epilepsy never find out the cause. But some people's epilepsy is known to have a cause, such as an illness, an infection, an injury, or a problem in the way their brain developed.

For more information on treatments for epilepsy see our leaflet Epilepsy: what treatments work?

What are the symptoms?

The only symptom most people get from epilepsy is having seizures. Seizures can last for a few seconds or for several minutes. After a seizure is over, some people know what happened to them but others don’t remember.

Seizures are not usually harmful. But if you see someone having a seizure that lasts more than five minutes, call for an ambulance. The person having the seizure may need emergency treatment to stop it.

After a person's first seizure their doctor should send them to a specialist for tests. The specialist will do a type of scan called an electroencephalogram (EEG) and other tests to try to find out if the person has epilepsy.

There are many types of seizure. Most people will get only one type. It's important for your doctor to work out what type of seizure you or your child has had. Some treatments work best for certain types of seizure. Different types of seizure affect your brain differently.

Focal seizures

Focal seizures affect just one part of your brain. The symptoms depend on what that part of the brain does.

• In some focal seizures, you remain aware of what's going on. The muscles in your arms, legs, and face may become stiff and your limbs may twitch on one side of your body. You may have unusual sensations, such as smelling strange smells, having distorted vision, or feeling scared.

• Sometimes there is a warning sign (an aura) before a focal seizure. When this happens you become less aware of your surroundings. You might black out (lose consciousness). Some people start fidgeting or walking around.

Generalised seizures

Generalised seizures affect your whole brain. During most of these seizures the person blacks out (loses consciousness). These are the main types:

• Tonic-clonic seizures cause a mixture of symptoms. These symptoms include stiffening of your body and jerking of your arms and legs. Some people bite their tongue or lose control of their bladder during the seizure.

• Absence seizures cause you to appear like you're staring blankly into space and are unaware of your surroundings. They usually last only a few seconds. These happen most commonly in children and teenagers. They don't usually continue into adulthood.

• Myoclonic seizures cause your upper body, arms, or legs to jerk or twitch. You tend not to black out if you have this type of seizure.

• Atonic seizures make your muscles suddenly relax. This makes you fall down without warning.

What will happen to me?

Most people with epilepsy lead a full, healthy, and active life. There is very little that epilepsy stops them doing.

If you've had only one seizure, you may not have another. Nearly two-thirds of people don't have another seizure in the two years after their first. But if you've had two or more seizures you are very likely to have more. It's unlikely that the seizures will go away without treatment.

You or your child may be able to stop taking medicines if the seizures stop. But if the seizures don't stop you may need to take medicines for the rest of your life. If you have been free of seizures for two years you could talk to your doctor about stopping your medicines. But your chance of having another seizure goes up again when you stop taking your medicines.

You should not stop taking epilepsy medicines without a doctor’s help. Most people need to reduce the dose very gradually. Stopping taking these medicines suddenly can cause seizures.

Most seizures are not harmful. But they can increase your chances of having an injury. Very rarely, people with epilepsy can have a bad seizure that lasts a long time. Doctors call this status epilepticus. It can be dangerous.

Pregnancy

Having a baby when you have epilepsy is not as safe as for most women. But more than 90 in 100 women with epilepsy who get pregnant have a normal, healthy baby. If you're planning to get pregnant you should discuss your epilepsy treatment with your doctor first.

Epilepsy and driving, work, and leisure time

If you've had a seizure you must stop driving, even if you haven't been diagnosed with epilepsy. You will need to write to the relevant vehicle registration agency (for example, in the UK it's the DVLA) to let them know you've had a seizure. They might decide that you need to stop driving altogether. Or you may be allowed to start driving again if you don't have a seizure for a certain period of time.

You might also have to think about changes to the way you work: for example, if you work with machinery, or at height (for example, up ladders), or in a commercial kitchen. You might have to take similar precautions with your hobbies and leisure activities.

Surgery

Most people with epilepsy don't need surgery. But if medicines don’t work to control your epilepsy, you may be suitable for surgical treatments. This is a big step and you will need tests to be certain surgery is likely to help you. Your doctor will explain the types of surgery that might help.

Where to get more help

Ask your doctor about support groups and charities in your area that may be able to help. For example, in the UK the Epilepsy Society (http://www.epilepsysociety.org.uk/) is a charity offering advice and support to people with epilepsy and their families.