Overview
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.
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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.
When to get medical help
See a GP if you think you might have had a seizure for the first time.
This does not 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.
Call 999 for an ambulance if someone:
- is having a seizure for the first time
- has a seizure that lasts more than 5 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:
- medicines called anti-seizure medicine (ASMs) – 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.
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 a 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.
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 1 in 3 people with epilepsy have a family member with it.
Occasionally, epilepsy can be caused by damage to the brain, such as damage from:
- a stroke
- a brain tumour
- a severe head injury
- drug abuse or alcohol misuse
- a brain infection
- a lack of oxygen during birth
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 shake (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's 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 won't be able to respond to anyone else during the seizure and you will not 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:
- tonic stage – you lose consciousness, your body goes stiff, and you may fall to the floor
- 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 seizures
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 seizures
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 doesn't 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 have not had any training, call 999 for an ambulance immediately if someone has a seizure that has not stopped after 5 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.
Further information
Diagnosis
If you have a seizure, a 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 2 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 1 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 and 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 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.
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 main scan used is a magnetic resonance imaging (MRI) scan. This uses magnetic fields and radio waves to create an image of your brain.
The scanner is a large tube that you lie inside.
Further information
Treatment
Treatment can help most people with epilepsy have fewer seizures, or stop having seizures completely.
Treatments include:
- medicines called anti-seizure medicine (ASMs)
- 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-seizure medicine (ASMs)
ASMs are the most commonly used treatment for epilepsy. They help control seizures in about 7 out of 10 people.
ASMs work by changing the levels of chemicals in your brain. They don't cure epilepsy, but can stop seizures happening.
Types of ASMs
There are many ASMs.
Common types include:
- sodium valproate
- carbamazepine
- lamotrigine
- levetiracetam
- 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 ASMs can harm an unborn baby.
If your doctor recommends taking an ASM, ask them about the different types available and which is likely to be the most suitable for you.
Taking ASMs
ASMs 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's important you follow any advice about when to take ASMs and how much to take. Never suddenly stop taking an ASM – 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 ASMs, 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 ASM works.
Side effects
Side effects are common when starting treatment with ASMs. 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're taking.
General common side effects of ASMs 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 have symptoms similar to being drunk, such as unsteadiness, poor concentration and being sick. This could mean your dose is too high.
For information about the side effects of your medicine, check the information leaflet that comes with it.
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Brain surgery
Surgery to remove part of your brain may be an option if:
- ASMs are not 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 ASMs, 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 ASMs for 1 to 2 years.
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.
Further information
Other procedures
If ASMs aren't controlling your seizures and brain surgery isn't suitable for you, there are other procedures that could help.
Vagus nerve stimulation (VNS)
Vagus nerve stimulation (VNS) is where a small electrical device similar to a pacemaker is placed under the 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 ASMs.
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 procedure 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.
Further information
Ketogenic diet
A ketogenic diet is a diet high in fats, and low in carbohydrates and protein. In children, it's thought it may make seizures less likely by changing the levels of chemicals in the brain.
The ketogenic diet 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.
A ketogenic diet is sometimes recommended for children with seizures that are not controlled by ASMs. This is because it's 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.
Further information
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 cautious about advice from anyone other than your GP or specialist 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 epilepsy medication.
St John's Wort, a herbal remedy used for mild depression, isn't recommended for people with epilepsy because it can affect the levels of epilepsy medication in the blood and may stop the medicine working properly.
There are reports that some strong-smelling aromatherapy treatments such as hyssop, rosemary and sweet fennel, may trigger seizures in some people.
For some people with epilepsy, stress can trigger seizures. Stress-relieving and relaxation therapies such as exercise, yoga and meditation may help.
Further information
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 medicine
Anti-seizure medicine (ASMs) can be very effective in stopping or reducing the frequency of seizures.
If you've been prescribed an ASM, 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 ASMs to find one that works for you and does not 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.
If you identify any triggers, doing what you can to avoid them can help reduce the number of seizures you have.
For example, it might help to:
- deal with stress
- avoid becoming too tired
- cut down on alcohol
Have regular reviews
You'll have regular reviews of your epilepsy and treatment. These are usually carried out by your GP, but sometimes may 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. For exampe you may want to ask advise about side effects from your medicine.
Further information
Staying safe
Having seizures can sometimes put you or others at risk of harm – for example, if they happen while you're cooking, driving or swimming.
If your seizures are not 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
- do not lock the bathroom door
- place saucepans on the back burners and with the handles turned away from the edge of the cooker
Further information
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 are not 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
Further information
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 have not had a seizure for at least a year.
Further information
Pregnancy and contraception
Getting pregnant
Epilepsy does not affect your ability to have children and there's no reason why you cannot 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 ASMs can harm an unborn baby. For more information visit the Epilepsy Action website. Your doctor may suggest switching to another ASM 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. Do not stop taking your medicine without speaking to them first.
Using contraception
If you do not want 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 ASMs can affect how certain contraceptives work, including the combined contraceptive pill.
Methods of contraception that aren't affected by ASMs 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.
Further information
School and education
Children with epilepsy can usually attend a mainstream school and participate fully in school activities.
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.
Further information
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 have 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 do not have to drive as part of your job
- giving written rather than spoken instructions
- letting you have extra breaks and time off for medical appointments
Further information
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:
Further information
Support groups
There are 2 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're worried 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've lost a loved one as a result of epilepsy.
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