12 Common
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About Epilepsy

Epilepsy is a brain condition.

It can make a person have seizures (sometimes called ‘fits’ or ‘attacks’).

A seizure is a sudden burst of electrical activity in the brain.

A seizure can make things happen to your brain and body – these things can be different for different people.

a person having an epileptic fit

Some seizures make your body jerk and shake.

Some seizures make you feel a bit strange or make you unsure where you are.

Epilepsy can start at any age and usually lasts for the rest of your life.

We don’t know why most people have epilepsy.

For some people it may be passed through their family.

Sometimes it can be caused by things like a stroke or a brain injury.

People with epilepsy don’t need medical treatment every time they have a seizure.

Call 999 for an ambulance if someone:

  • Is having a seizure for the first time.

  • Has a seizure which lasts more than 5 minutes.

  • Has lots of seizures in a row.

  • Has breathing problems.

  • Has seriously hurt themselves.

a gravestone

Sometimes people can die during a seizure. This does not happen very often.

It is really important to control your epilepsy as best you can.

What Are The Symptoms Of Epilepsy?

Symptoms are signs that something is wrong.

The main symptom of epilepsy is having more than one seizure (sometimes called ‘fits’ or ‘attacks’).

Seizures can happen when you are awake or asleep.

There are different types of seizures.

Partial seizures

You may have a partial seizure. This is when only a small part of your brain is affected.

There are 2 types of partial seizures: simple and complex.

If you have a simple partial seizure you might:

  • Have a strange feeling that is hard to describe.

 

  • Have a rising feeling in your tummy – like on a fairground ride.

  • Feel like things have happened before (called déjà vu).

  • Have a strange taste in your mouth or think things smell strange.

  • Have tingling in your arms and legs.

  • Suddenly feel very scared or very happy.

  • Feel part of your body stiffen or twitch.

If you have one of these seizures you will stay awake and will know what is happening to you.

If you have a complex partial seizure you might:

  • Keep opening and closing your mouth and lick your lips (called smacking your lips).

  • Rub your hands.
  • Make random noises.

  • Move your arms around.

  • Pick at your clothes.

  • Fiddle with things.

  • Feel like you need to chew or swallow.

  • If you have one of these seizures you will not know what is happening. You won’t be able to remember it afterwards.

Simple seizures are sometimes a warning sign that you are about to have a bigger seizure.

Generalised seizures

You may have a generalised seizure. This is when most of your brain is affected.

There are several types of generalized seizure. Two main types are tonic-clonic and absence.

If you have a tonic-clonic seizure:

  • You will lose consciousness, like fainting.

a person having an epileptic fit
  • You might fall to the floor.

  • You will jerk about.

  • Your body will go stiff.

  • You might wet yourself.

  • You might bite your tongue or the inside of your cheek.

  • You might find it difficult to breath.

These seizures usually last a few minutes.

Afterwards you might have a headache. You might feel tired and confused.

If you have an absence seizure you might:

  • Stare blankly into space.

  • Flutter your eyes.

  • Make small jerky movements.

This usually lasts about 15 seconds. It can happen several times a day.

You won’t be able to remember this happening.

Finding out if you have epilepsy

If you have a seizure, go and see your GP.

They might send you to see a specialist doctor, called a neurologist. They are an expert in the brain and nerves.

Try to tell the doctor as much as you can about your seizures. You could write this down to help you remember.

It is helpful to take someone with you who has seen you have a seizure.

It is helpful to take a video of you having a seizure.

You might have some tests to check your brain:

  • An EEG can see anything unusual happening in your brain.

  • An MRI scan can spot anything wrong with your brain, like damage to the brain.

Treatment And Care For Epilepsy

Seizures can be dangerous. It is important to try and control them as much as you can.

Sometimes seizures just happen. Other times there is something that makes you likely to have a seizure – called a ‘trigger’.

Knowing that something makes you likely to have a seizure can help you to try and stop them happening.

Things that might bring on a seizure are:

  • Feeling very worried or anxious about things.

  • Being very tired.

  • Waking up from a sleep.

  • Drinking alcohol.

  • Taking some medicines or illegal drugs.

  • In women, having your monthly period.

  • Flashing lights (this does not affect many people).

To find out if there is something that makes you likely to have a seizure, you could keep a diary.

Write down when you had a seizure and what happened before you had a seizure.

Treatment

Treatment can help most people with epilepsy.

Taking anti-epileptic drugs (AEDs)

You can take anti-epileptic drugs (AEDs).

This is the treatment most often used to treat epilepsy.

AEDs don’t cure epilepsy. But they can stop you from having seizures.

They can come in tablets, capsules, liquid or syrup.

There are different types of AEDs – your doctor or nurse will help you find one that works for you.

You will start by taking a small amount. You will gradually take more until you stop having seizures.

If the first AED you try doesn’t work, you might need to try a different one.

Don’t stop taking AEDs without speaking to your doctor or nurse first.

Side-effects are things that can happen to your body because of your treatment. You might:

  • Feel tired.

  • Feel restless and nervous.

  • Get headaches.

  • Shake.

  • Lose some of your hair.

  • Have swollen gums.

a person scratching their hand
  • Have a rash.

If you feel unsteady, can’t concentrate or are sick speak to your GP or nurse.

Close-up of a woman inhaling anaesthetic gas

Having an operation on your brain

You might be able to have an operation to take away a small part of your brain. You will have tests to see if this will work for you.

You would go to hospital for the operation.

You would need a few weeks or months afterwards to feel back to normal.

There are some risks with having an operation. Talk to your doctor to decide if you want to have the operation.

Having a small electrical device put inside your body

You might be able to have an operation to put a small electrical device under the skin of your chest.

It works by sending small bursts of electricity through a wire to a nerve in your neck.

a person having an epileptic fit

This can help make seizures happen less often. It can stop them being as bad as before.

Side-effects are things that can happen to your body because of your treatment. You will get a hoarse voice, sore throat and a cough.

You will need to have another operation to have the device changed after 10 years.

There is a new treatment where the wire from the electrical device is connected to your brain.

This can have some very serious side-effects. You should think about this very carefully if your doctor suggests this.

Eating a special diet

Eating a special diet might help to make seizures less likely. This is called a ketogenic diet.

You eat more fatty foods.

You eat less foods with carbohydrates and protein.

Adults are not usually told to follow this diet. It can be dangerous because eating a lot of fat can make you ill.

You should only do this if your doctor tells you to.

Other treatment

Some people think that other things make their epilepsy better. This could be herbal remedies you get from health shops.

You should always speak to your doctor before trying any other treatment.

Staying safe

If you have a seizure while you are doing something like cooking, driving or swimming, it can be dangerous for you and other people.

You can do some things to help you and others to stay safe.

At home you can:

  • Put guards over heaters and radiators.

  • Make sure you have working smoke alarms.

  • Cover sharp edges on furniture.

  • Have a shower instead of a bath.

  • Don’t lock the bathroom door.

  • Put saucepans on the back burners and turn handles away from the edge of the cooker.

If you want to do sports you usually can. Make sure you think about how to stay safe.

You should:

  • Not swim on your own.

  • Wear a helmet if you ride a bike.

  • Speak to staff at the gym to find out what machines you can use.

  • You must not drive if you have seizures that are not under control.

If you want to drive, speak to the Driving and Vehicle Licence Authority (DVLA) about your epilepsy. They will tell you if it is ok.

  • If you are a woman and want to have a baby, speak to your doctor. It is safe to have a baby if you have epilepsy. But some treatment for epilepsy can be dangerous for an unborn baby.

  • You might want to stop yourself from having a baby.

Some tablets you can take to stop you having a baby don’t work if you are having treatment for epilepsy.

Speak to your doctor about what you should do.

Having a job

If you have a job, your epilepsy might make it hard for you to do some parts of your job.

Speak to your employer. The law says they should make changes to help you to do your job.

Money

If you can’t work because of your epilepsy, you can get money from benefits. Find out more at www.gov.uk

You can get all medicine that your doctor says you need for free. Ask your doctor for an ‘exemption certificate’.

Getting help and advice about epilepsy

You can get help and advice from:

Epilepsy Society

Helpline 01494 601 400

Email helpline@epilepsysociety.org.uk

Epilepsy action

Helpline 0808 800 5050

Email helpline@epilepsy.org.uk

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