Introduction

Epilepsy is a common condition that affects the brain and causes frequent seizures.

Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.

Epilepsy can start at any age, but usually starts either in childhood or in people over 60. It's often lifelong, but can sometimes get slowly better over time.

Symptoms of epilepsy

Seizures can affect people in different ways, depending on which part of the brain is involved.

Possible symptoms include:

  • uncontrollable jerking and shaking - called a "fit"
  • losing awareness and staring blankly into space
  • becoming stiff
  • strange sensations - such as a "rising" feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs
  • collapsing

Sometimes you might pass out and not remember what happened.

Read more about the symptoms of epilepsy.

When to get medical help

See your GP if you think you might have had a seizure for the first time.

This doesn't mean you have epilepsy, as a seizure can have several causes and sometimes they're just a one-off, but you should see a doctor to find out why it happened.

Read about the tests for epilepsy you might have.

Call 999 for an ambulance if someone:

  • is having a seizure for the first time
  • has a seizure that lasts more than five minutes
  • has lots of seizures in a row
  • has breathing problems or has seriously injured themselves

Treatments for epilepsy

Treatment can help most people with epilepsy have fewer seizures or stop having seizures completely.

Treatments include:

  • medicine called anti-epileptic drugs - these are the main treatment
  • surgery to remove a small part of the brain that's causing the seizures
  • a procedure to put a small electrical device inside the body that can help control seizures
  • a special diet (ketogenic diet) that can help control seizures

Some people need treatment for life. But you might be able to stop treatment if your seizures disappear over time.

Read more about treatments for epilepsy.

Living with epilepsy

Epilepsy is usually a lifelong condition, but most people with it are able to have normal lives if their seizures are well controlled.

Most children with epilepsy are able to go to mainstream school, take part in most activities and sports, and get a job when they're older.

But you may have to think about your epilepsy before you do things such as driving, certain jobs, swimming, using contraception and planning a pregnancy.

Advice is available from your GP or support groups to help you adjust to life with epilepsy.

Read more about living with epilepsy.

Causes of epilepsy

In epilepsy, the electrical signals in the brain become scrambled and there are sometimes sudden bursts of electrical activity. This is what causes seizures.

In most cases, it's not clear why this happens. It's possible it could be partly caused by your genes affecting how your brain works, as around one in three people with epilepsy have a family member with it.

Occasionally, epilepsy can be caused by damage to the brain, such as damage from:

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Symptoms

The main symptom of epilepsy is repeated seizures. These are sudden bursts of electrical activity in the brain that temporarily affect how it works.

Seizures can affect people in different ways, depending on which part of the brain is involved.

Some seizures cause the body to jerk and skake (a "fit"), while others cause problems like loss of awareness or unusual sensations. They typically pass in a few seconds or minutes.

Seizures can occur when you're awake or asleep. Sometimes they can be triggered by something, such as feeling very tired.

Types of seizures

Simple partial (focal) seizures or 'auras'

A simple partial seizure can cause:

  • a general strange feeling that is hard to describe
  • a "rising" feeling in your tummy – like the sensation in your stomach when on a fairground ride
  • a feeling that events have happened before (déjà vu)
  • unusual smells or tastes
  • tingling in your arms and legs
  • an intense feeling of fear or joy
  • stiffness or twitching in part of your body, such as an arm or hand

You remain awake and aware while this happens.

These seizures are sometimes known as "warnings" or "auras", because they can be a sign that another type of seizure is about to happen. 

Complex partial (focal) seizures

During a complex partial seizure, you lose your sense of awareness and make random body movements, such as:

  • smacking your lips
  • rubbing your hands
  • making random noises
  • moving your arms around
  • picking at clothes or fiddling with objects
  • chewing or swallowing

You will not be able to respond to anyone else during the seizure and you won't have any memory of it.

Tonic-clonic seizures

A tonic-clonic seizure, previously known as a "grand mal", is what most people think of as a typical epileptic fit.

They happen in two stages - an initial "tonic" stage, shortly followed by a second "clonic" stage:

  1. tonic stage - you lose consciousness, your body goes stiff, and you may fall to the floor
  2. clonic stage - your limbs jerk about, you may lose control of your bladder or bowel, you may bite your tongue or the inside of your cheek, and you might have difficulty breathing

The seizure normally stops after a few minutes, but some last longer. Afterwards, you may have a headache or difficulty remembering what happened and feel tired or confused.

Absences

An absence seizure, which used to be called a "petit mal", is where you lose awareness of your surroundings for a short time. They mainly affect children, but can happen at any age.

During an absence seizure, a person may:

  • stare blankly into space
  • look like they're "daydreaming"
  • flutter their eyes
  • make slight jerking movements of their body or limbs

The seizures usually only last up to 15 seconds and you won't be able to remember them. They can happen several times a day.

Myoclonic seizures

A myoclonic seizure is where some or all of your body suddenly twitches or jerks, like you've had an electric shock. They often happen soon after waking up.

Myoclonic seizures usually only last a fraction of a second, but several can sometimes occur in a short space of time. You normally remain awake during them.

Clonic seizure

Clonic seizures cause the body to shake and jerk like a tonic-clonic seizure, but you don't go stiff at the start.

They typically last a few minutes and you might lose consciousness.

Tonic seizure

Tonic seizures cause all your muscles to suddenly become stiff, like the first stage of a tonic-clonic seizure.

This might mean you lose balance and fall over.

Atonic seizures

Atonic seizures cause all your muscles to suddenly relax, so you may fall to the ground.

They tend to be very brief and you'll usually be able to get up again straight away.

Status epilepticus

Status epilepticus is the name for any seizure that lasts a long time, or a series of seizures where the person does not regain consciousness in between.

It's a medical emergency and needs to be treated as soon as possible.

You can be trained to treat it if you look after someone with epilepsy. If you haven't had any training, call 999 for an ambulance immediately if someone has a seizure that hasn't stopped after five minutes.

Seizure triggers

For many people with epilepsy, seizures seem to happen randomly.

But sometimes they can have a trigger, such as:

  • stress
  • a lack of sleep
  • waking up
  • drinking alcohol
  • some medications and illegal drugs
  • in women, monthly periods
  • flashing lights (this is an uncommon trigger)

Keeping a diary of when you have seizures and what happened before them can help you identify and avoid some possible triggers.

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Diagnosis

If you have a seizure, your GP may refer you to a specialist to find out what caused it.

You'll usually see a doctor called a neurologist. This is someone who's an expert in conditions that affect the brain and nerves.

They'll want to find out more about your seizure and may suggest having some tests.

Waiting to see a specialist

You should see a specialist within two weeks of being referred.

There's a chance you could have another seizure while waiting for your appointment, so during this time it's best to avoid activities that could put you or others in danger if you were to have a seizure.

For example, you should avoid driving and swimming until you've seen a specialist.

Contact your GP for advice if you have another seizure while waiting for your appointment.

Finding out about your seizures

It can be hard to diagnose epilepsy quickly because other conditions, such as fainting, migraines and panic attacks, can cause similar symptoms. It often can't be confirmed until you've had more than one seizure.

It'll help your specialist if you can describe what you remember about your seizure in as much detail as possible, including things like:

  • when you had the seizure
  • what you were doing when it happened
  • how you felt before, during or afterwards

It may help to write some notes before your appointment and bring them with you.

It can also be very useful to bring along someone who's seen you have a seizure, or to bring a video recording of you having a seizure if possible.

Tests for epilepsy

Your specialist may suggest having a test to check your brain activity called an electroencephalogram (EEG) or a brain scan to look for any problem in your brain.

But if these tests don't show anything, it's still possible you have epilepsy, and you may be diagnosed just based on your symptoms.

Checking your brain activity (EEG)

An electroencephalogram (EEG) is used to check for unusual electrical activity in the brain that can happen in people with epilepsy.

During the test, small sensors are attached to your scalp to pick up the electrical signals produced when brain cells send messages to each other.

These signals are recorded by a machine and are looked at to see if they're unusual.

Read more about EEGs.

Brain scan

A brain scan can help spot problems in your brain that can sometimes cause epilepsy, such as :

  • an unusual growth (brain tumour)
  • damage to the brain, such as damage caused by a stroke
  • scarring in the brain

The scanner is a large tube that you lie inside.

Read more about MRI scans.

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Treatment

Treatment can help most people with epilepsy have fewer seizures, or stop having seizures completely.

Treatments include:

  • medicines called anti-epileptic drugs (AEDs)
  • surgery to remove a small part of the brain that's causing the seizures
  • a procedure to put a small electrical device inside the body that can help control seizures
  • a special diet (ketogenic diet) that can help control seizures

Some people need treatment for life. But you might be able to stop if your seizures disappear over time.

You may not need any treatment if you know your seizure triggers and are able to avoid them.

Talk to your specialist about the treatments available and which might be best for you.

Anti-epileptic drugs (AEDs)

AEDs are the most commonly used treatment for epilepsy. They help control seizures in about 70% of people.

AEDs work by changing the levels of chemicals in your brain. They don't cure epilepsy, but can stop seizures happening.

Types of AEDs

Common types include:

  • sodium valproate
  • carbamazepine
  • lamotrigine
  • levetiracetam
  • oxcarbazepine
  • ethosuximide
  • topiramate

The best type for you will depend on things like the type of seizures you have, your age and if you're thinking of having a baby.

Some AEDs can harm an unborn baby - see living with epilepsy for more information.

If your doctor recommends taking an AED, ask them about the different types available and which is likely to be the most suitable for you.

Taking AEDs

AEDs are available in a number of different forms, including tablets, capsules, liquids and syrups. You usually need to take the medicine every day.

Your specialist will start you on a low dose and gradually increase it until your seizures stop. If the first medicine you try doesn't work, your doctor may recommend trying another type.

It is important you follow any advice about when to take AEDs and how much to take. Never suddenly stop taking an AED - doing so could cause a seizure.

If you haven't had a seizure for a few years, ask your doctor if you might be able to stop treatment. If they think it's safe, your dose will be reduced gradually over time.

While taking AEDs, do not take any other medicines, including over-the-counter medicines or complementary medicines, without speaking to your GP or specialist. Other medicines could affect how well your AED works.

Side effects

Side effects are common when starting treatment with AEDs. Some may appear soon after starting treatment and pass in a few days or weeks, while others may not appear for a few weeks.

The side effects you may get depend on the medicine you are taking.

General common side effects of AEDs include:

  • drowsiness
  • a lack of energy
  • agitation
  • headaches
  • uncontrollable shaking (tremor)
  • hair loss or unwanted hair growth
  • swollen gums
  • rashes - contact your GP or specialist if you get a rash, as it might mean you're having a serious reaction to your medicine.

Contact your GP or specialist if you experience symptoms similar to being drunk, such as unsteadiness, poor concentration and vomiting. This could mean your dose is too high.

For information on the side effects of your medicine, check the information leaflet that comes with it.

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Brain surgery

Surgery to remove a part of your brain may be an option if:

  • AEDs aren't controlling your seizures
  • tests show that your seizures are caused by a problem in a small part of your brain that can be removed without causing serious effects

In these cases, there's a good chance that your seizures could stop completely after surgery.

Tests before surgery

If your epilepsy is poorly controlled after trying several AEDs, you may be referred to a specialist epilepsy centre to see if surgery might be possible.

This will usually involve having several tests, such as:

  • brain scans
  • an electroencephalogram (EEG) - a test of your brain's electrical activity
  • tests of your memory, learning abilities and mental health

The results of these tests will help you and your specialist decide if surgery is an option for you, and what the result of surgery might be.

What happens during surgery

Surgery for epilepsy is usually carried out under general anaesthetic, where you're asleep.

The surgeon makes a small cut in your scalp and creates an opening in your skull so they can remove the affected part of the brain.

The openings in your skull and scalp are closed at the end of the operation.

Recovery and risks

It's likely to take a few weeks or months for you to feel back to normal after surgery.

Your seizures may not stop straight away, so you might need to keep taking AEDs for a year or two.

There's a risk of complications from surgery, such as problems with your memory, mood or vision, These problems may improve over time, or they may be permanent.

Before having surgery, make sure you talk to your surgeon about the possible risks.

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Other procedures

If AEDs aren't controlling your seizures and brain surgery isn't suitable for you, there are other procedures that could help.

Vagus nerve stimulation (VNS)

VNS is where a small electrical device, similar to a pacemaker, is placed under your skin of your chest.

The device is attached to a wire that goes under your skin and connects to a nerve in your neck called the vagus nerve. Bursts of electricity are sent along the wire to the nerve.

It's thought this can help control seizures by changing the electrical signals in the brain.

VNS doesn't usually stop seizures completely, but it can help make them less severe and less frequent. You'll probably still need to take AEDs.

Side effects of VNS include a hoarse voice, a sore throat and a cough when the device is activated. This normally occurs every five minutes and lasts for 30 seconds.

The battery for the VNS device typically lasts up to 10 years, after which time another procedure will be needed to replace it.

Deep brain stimulation (DBS)

Deep brain stimulation (DBS) is similar to VNS, but the device placed in the chest is connected to wires that run directly into the brain.

Bursts of electricity sent along these wires can help prevent seizures by changing the electrical signals in the brain.

DBS is a fairly new procedures that's not used very often, so it's not yet clear how effective it is for epilepsy.

There are also some serious risks associated with it, including bleeding on the brain, depression and memory problems.

If your doctor suggests DBS as an option, make sure you talk to them about the potential benefits and risks.

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Ketogenic diet

A ketogenic diet is a diet high in fats, and low in carbohydrates and protein. In children, it is thought it may make seizures less likely by changing the levels of chemicals in the brain.

It was one of the main treatments for epilepsy before AEDs were available, but isn't widely used in adults because a high-fat diet is linked to serious health conditions, such as diabetes and cardiovascular disease (CVD).

But a ketogenic diet is sometimes advised for children with seizures that aren't controlled by AEDs. This is because it has been shown to reduce the number of seizures in some children.

It should only be used under the supervision of an epilepsy specialist with the help of a dietitian.

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Complementary therapies

There are several complementary therapies that some people with epilepsy feel work for them. But none has been shown to reduce seizures conclusively in medical studies.

You should therefore be caution about advice from anyone other than your GP or specialists to reduce or stop taking your medication and try alternative treatments. Stopping your medicine without medical supervision may cause seizures.

Herbal remedies should also be used cautiously because some of their ingredients can interact with anti-epilepsy medication.

St John’s Wort, a herbal remedy used for mild depression, is not recommended for people with epilepsy because it can affect the levels of epilepsy medication in the blood and may stop the medicine working properly.

For some people with epilepsy, stress can trigger seizures. Stress-relieving and relaxation therapies such as exercise, yoga and meditation may help.

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Living with

As epilepsy can affect people in different ways, everyone's experience of living with the condition is different. But there are some general points that can help.

Controlling your seizures

Seizures can be dangerous, so it's important to try to keep them as well controlled as possible. There are several things you can do to help.

Take your medication

Anti-epileptic drugs (AEDs) can be very effective in stopping or reducing the frequency of seizures.

If you've been prescribed an AED, make sure you take it every day as advised by your doctor.

Tell your doctor if your medicine is causing unpleasant side effects. Don't skip doses or stop taking it without getting medical advice, as this could cause you to have a seizure.

You might need to try several AEDs to find one that works for you and doesn't cause troublesome side effects.

You may eventually be able to stop taking your medicine once your seizures have been under control for some time, but this should be done gradually under medical supervision.

Identify and avoid seizure triggers

While not the case for everyone with epilepsy, seizures can sometimes have a trigger. Common seizure triggers include stress, lack of sleep and alcohol.

Keeping a seizure diary - detailing when you have seizures and what you were doing beforehand - may help you work out if you have any triggers.

You can download a blank seizure diary (PDF, 153kb) from the Epilepsy Action website.

If you identify any triggers, doing what you can to avoid them can help reduce the number of seizures you have.

For exmaple, it might help to:

  • deal with stress
  • avoid becoming too tired
  • cut down on alcohol

Have regular reviews

You will have regular reviews of your epilepsy and treatment. This is usually carried out by your GP, but sometimes might be done by your epilepsy specialist and their team.

Reviews should be carried out at least once a year, although you may need them more often if your epilepsy is not well controlled.

These appointments are a good opportunity to talk to your doctor about how you feel your treatment is going and any problems you're having, such as side effects from your medicine.

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Staying safe

Having seizures can sometimes put you or others at risk or harm - for example, if they happen while you're cooking, driving or swimming.

If your seizures aren't well controlled, there are things you can do to reduce the danger.

At home

Some tips to help you stay safe at home include:

  • use guards on heaters and radiators to stop you falling directly on to them
  • install smoke detectors to let you know that food is burning if you sometimes forget what you're doing or have seizures that cause you to lose awareness
  • cover any furniture edges or corners that are sharp or stick out
  • have a shower instead of a bath
  • don't lock the bathroom door
  • place saucepans on the back burners and with the handles turned away from the edge of the cooker

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Sports and leisure

Most people with epilepsy can take part in sports and other leisure activities, but there are some precautions you might need to take if your seizures aren't well controlled.

For example, you may need to:

  • avoid swimming or doing water sports on your own
  • wear a helmet while cycling or horse riding
  • avoid using certain types of gym equipment - ask staff at the gym for advice

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Driving

You must stop driving and tell the Driving and Vehicle Licence Authority (DVLA) if you've had a seizure.

Your licence may be taken away until your seizures are under control.

When you can reapply for a licence depends on the type of seizure you had - for example, if you've had seizures that caused you to lose consciousness, you won't be able to reapply until you haven't had a seziure for at least a year.

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Pregnancy and contraception

Getting pregnant

Epilepsy doesn't affect your ability to have children and there's no reason why you can't have a healthy pregnancy.

But if you're thinking of trying for a baby, it's best to discuss your plans with your doctor.

This is because some AEDs - particularly sodium valproate - can harm an unborn baby. Your doctor may suggest switching to another AED if there's any risk to your baby.

If you suddenly find out you're pregnant, contact your doctor for advice as soon as possible. Don't stop taking your medicine without speaking to them first.

There are no risks associated with breastfeeding while taking AEDs.

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Using contraception

If you don't wish to get pregnant, it's important to use a reliable form of contraception.

Ask your doctor about the best type of contraception to use, as some AEDs can affect how certain contraceptives work, including the combined contraceptive pill.

Methods of contraception that aren't affected by AEDs include the:

It's also a good idea to use a condom as well.

Speak to your GP, a pharmacist or a family planning clinic if you need emergency contraception. You may need to have an IUD fitted.

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Children and epilepsy

Children with epilepsy can usually attend a mainstream school and participate fully in school activites.

Make sure your child's school and teachers are aware of their condition, including:

  • what medication your child takes
  • how to spot and deal with a seizure
  • the impact their epilepsy may have on their attendance and schoolwork - for example, epilepsy can sometimes affect behaviour and concentration

Some children with epilepsy need extra support to get the most out of their time at school.

Speak to the school if your child has special educational needs so you can discuss the support your child needs and what the school can offer.

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Work, money and benefits

Working with epilepsy

If your epilepsy is well controlled, it may not have any effect on your work.

Speak to your employer if your condition makes it difficult to do your job. They're required to make reasonable adjustments to your work tasks to allow you to keep working.

This may include things like:

  • changing your work hours
  • making sure you don't have to drive as part of your job
  • giving written rather than spoken instruments
  • letting you have extra breaks and time off for medical appointments

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If you have to stop working

If you have to stop work or work part-time because of your epilepsy, you may be entitled to one or more of the following types of financial support:

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Support groups

There are two main epilepsy support groups that you might find a useful source of information and advice.

Epilepsy Action

Support available from Epilepsy Action includes:

Epilepsy Society

Support available from the Epilepsy Society includes:

Sudden unexpected death in epilepsy (SUDEP)

Sometimes a person with epilepsy dies during or after a seizure for no obvious reason. This is known as sudden unexpected death in epilepsy (SUDEP).

This is rare, but it's important to be aware of the danger because it may sometimes be preventable.

The main thing you can do to reduce your risk is to make sure your epilepsy is well controlled by taking your medication as recommended and avoiding seizure triggers when possible.

If you are worried that your epilepsy is poorly controlled, contact your epilepsy specialist. It may be possible to refer you to a specialist epilepsy centre for further treatment.

A charity called SUDEP Action can offer advice and support, as well as a helpline for people who have lost a loved one as a result of epilepsy.

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The information on this page has been adapted by NHS Wales from original content supplied by NHS Choices.
Last Updated: 21/03/2018 11:51:13