Living with epilepsy - an introduction

Introduction

About epilepsy

In the world, there are over 600,000 people with epilepsy.

Any one of us can have a one-off epileptic seizure. But if you have epilepsy, it means you have had more than one epileptic seizure. And you could have some more in the future.
Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy
There are many types of epilepsy. Some types of epilepsy start when you are very young, and some in later life. Some types last for a short time and other types can last for the whole of your life.

The causes of epilepsy

In around six out of 10 people, doctors don’t know the cause of their epilepsy. For many of these people, it is just part of how they are made that makes them more likely to have a seizure.
Some people do have a cause for their epilepsy. One cause can be brain damage. There are a number of things that can cause brain damage. These include:

• a difficult birth
• a brain infection, such as meningitis
• a stroke
• a serious brain injury.

There doesn’t have to be damage to your brain for you to have epilepsy. You could have a medical condition in which it is quite common to also have epilepsy. Some of these conditions are tuberous sclerosis and cerebral palsy. In some people with a learning disability, the cause of their learning disability can also cause their epilepsy.
When epilepsy begins in later life, it’s more usual for doctors to find a cause. For example, you may be recovering from a stroke . Or, you may have had an accident or illness at some time in your life that left some scarring on your brain.

About epileptic seizures

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. In this information this intense electrical activity is called ‘epileptic activity’.

Seizure types

There are many different types of seizure. They can be classed by where in the brain the epileptic activity starts.

Focal (partial) seizures

In these seizures, the epileptic activity starts in just a part of your brain. You may stay alert in this type of seizure. Or you may not know what is going on around you. Parts of your body may move and you can’t stop it. Or you may have unusual sensations or feelings. Sometimes, other people may not be aware that you are having a seizure.
Focal seizures can be very brief or last for minutes. Sometimes, epileptic activity starts as a focal seizure, spreads to the rest of your brain and becomes a generalised seizure.

Generalised seizures

These seizures involve epileptic activity in both halves of your brain. You lose consciousness during this type of seizure, although sometimes it can be so brief that no one notices. Sometimes it can last for many minutes. The muscles in your body may stiffen and/or jerk. You may fall down.
More information on seizures is available from Epilepsy Action.

Things that trigger seizures

Some things make seizures more likely for some people with epilepsy. These are often referred to as ‘triggers’. Triggers are things like stress, not sleeping well and drinking too much alcohol. Some people say they have more seizures if they miss meals. Not taking your epilepsy medicine is another common trigger. A very small number of people with epilepsy have seizures triggered by lights that flash or flicker.
Avoiding triggers lowers the risk of having a seizure.

Diagnosis and treatment of epilepsy

Diagnosis

One of the most important parts of getting the right treatment for your seizures is getting the right diagnosis. Doctors base their diagnosis on what they are told about your seizures.
It is very helpful to keep a detailed diary of your seizures. You can show this to your doctor. It is also very helpful for someone who has seen you have a seizure to go with you to see your doctor. They can tell the doctor what it was like.
If your doctor thinks you may have epilepsy, they should arrange for you to see a doctor that specialises in epilepsy. This is usually a neurologist (for adults) or a paediatrician (for children). This doctor will probably suggest you have some tests. These tests may include blood tests, an EEG (recording of your brainwaves), and a brain scan. These tests can help the doctor work out the type and cause of the epilepsy. But there isn’t a single test that can prove if you do or don’t have epilepsy.
More information on diagnosis is available from Epilepsy Action.

Treatment

The main treatment for epilepsy is epilepsy medicine. You may hear these medicines called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy, but helps stop or reduce the number of seizures. Around 40 in every 100 people with epilepsy have their seizures stopped with the first epilepsy medicine they try.
There are also other ways to treat epilepsy. These include different types of epilepsy surgery, and a special diet sometimes used for children with epilepsy – the ketogenic diet.
More information on treatment is available from Epilepsy Action.

Epilepsy medicine

There are many different medicines for epilepsy. Your epilepsy specialist will recommend the best one for you. They should let you know how it works and what its possible side-effects are. It’s usual to start the medicine at a low dose and increase it step-by-step, until it’s at a dose that is going to work best for you. This slow increase helps to reduce any side-effects.
Everyone is different, and some people find they don’t get on with a particular medicine, even at a low dose. If this happens to you, you and your doctor could see if a different medicine would be better for you.
More information on epilepsy medicines is available from Epilepsy Action.

Paying for your epilepsy medicines

In the UK, if you have epilepsy, you don’t have to pay for your epilepsy medicine. If you live in England you will need to get an exemption certificate from your doctor. All prescriptions in Scotland, Wales and Northern Ireland are free of charge.

Living with epilepsy

Coming to terms with epilepsy

If you have just found out that you have epilepsy, you may need some time to come to terms with it. Having epilepsy can change things. It’s likely that you won’t be able to drive for some time. And you will have to think about some of the things you do, to make sure you are as safe as possible. But with the right treatment, you could be one of the seven out of 10 people that could have their seizures fully controlled.
You might want to talk to some other people with epilepsy. This could be at an Epilepsy Action local meeting. Or you could become a member of our online community, forum4e. This is a safe and friendly place to talk about your epilepsy. Go to www.forum4e.com
If you are finding it really hard to come to terms with your epilepsy, or it is making you anxious or worried, talk to your doctor.

The equality laws

In the UK there are laws that say everyone has the right to be treated fairly at work or when using services. The Equality Act covers people in England, Scotland and Wales. The Disability Discrimination Act covers people in Northern Ireland.
The equality laws are there to protect you if you have epilepsy, even if you are seizure-free. It doesn’t matter whether or not you take epilepsy medicine. And they protect you if you have had epilepsy in the past.

Memory

Finding it hard to remember things seems to be a common problem for people with epilepsy. Epileptic seizures can affect memory. If there is damage to the brain that causes the epilepsy, this can also cause memory problems. And some epilepsy medicine can affect memory.

Introduction

A self help guide for improving memory functioning in people with epilepsy.
It is widely recognised that people with epilepsy commonly have concerns about memory problems. This information, written by Professor Gus Baker and colleagues at the University of Liverpool, is a clear self-help guide to memory problems in people with epilepsy. This information is also useful for carers. It explains the difficulties that can be faced and provides simple strategies that may help the individual to overcome them.

What is memory?

Memory is the ability to recall past experience and knowledge. It is divided into short-term memory and long-term memory. Short-term memory deals with information that is to be remembered over a period of a few minutes, and long-term memory deals with anything that is to be remembered for longer than this.
Recording the memory in the first place is called encoding. The information is then passed from short-term to long-term memory for storage. Long-term memory is divided into three types.

• Procedural memoryActivities which are carried out almost without thinking, for example, riding a bike.
• Semantic memoryKnowledge that has been acquired but we are not sure when, for example, capital cities.
• Episodic memoryPersonal memories of everyday life.

Memory can also be divided into verbal and visual. Verbal memory is the ability to remember information which is perceived aurally, for example, words and sound. Visual memory is the ability to remember information that is provided visually, for example in terms of pictures and faces.
When we want to remember something, the information we need is brought back from long-term memory to short term memory. This is called retrieval.
If we have forgotten something it could be due to problems with:

• recording the memory in the first place (encoding)
• the storing of the memory (storage)
• recovering the memory from long term memory (retrieval).

What causes memory problems?

Everybody will experience some minor lapses in memory. These can occur when we are:

• under stress
• trying to concentrate on a number of things at once
• feeling unwell
• feeling tired.

Also, as we get older, lapses in memory can become more common. This variation is perfectly normal and nothing to be concerned about.
However, memory problems can be much more pronounced and long-term. They can be caused by a number of things, for example:

• a dementia type illness such as Alzheimer’s disease
• an infection of the brain, for example encephalitis
• a shortage of oxygen to the brain, as in cerebral palsy
• head injury
• certain types of stroke
• a brain tumour or brain haemorrhage
• epilepsy, on its own or with one of the above.

It is worthwhile noting that the cause of some of our memory problems may be due to another problem, which is resulting in impairment in memory. Here are some examples.

• An attention problem. If we do not pay attention to the information we are presented with then this information is not recorded by our memory.
• A language problem. Sometimes in conversation we find it hard to find the word that we are looking for. This can be misinterpreted as forgetting words.
• Anxiety and depression. People with an altered emotional state often experience memory difficulties. Those who experience anxiety can find their mind is too occupied with worrying thoughts to concentrate on things around them. Those who are low in mood can also feel lethargic and low in motivation, therefore lacking the attention needed to record a memory.
• Sleep disturbances. If we are not getting enough sleep then we can experience difficulty concentrating, which again disrupts our attention to information.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Depression 

Depression is common in people with epilepsy. There can be many reasons for depression. Sometimes it is linked to epilepsy or epilepsy medicines. If you have just found out you have epilepsy, you might have had to change things about your life that you don’t want to. Or other people might be treating you differently because of your epilepsy. If you think you are depressed, talk to your doctor as depression can be treated.

Introduction

Depression is common. It affects nearly one in six people in the UK. Anyone can experience depression. However, many studies show that it is more common if you have a long-term health condition like epilepsy. There is also some research which suggests that depression increases the risk of developing epilepsy.
Everybody feels down from time to time and this is quite normal. If you have been feeling low for a long time, and this is affecting your daily life, you may be experiencing depression. Depression may also cause people to be more anxious, to have a ‘short fuse’ or to develop problems with their memory.
This information is for you if you are worried that you might be depressed.

About depression

We might feel unhappy from time to time with the normal ups and downs of life. Sometimes the things that happen in our day-to-day lives can make us feel fed up, worried or distressed. This is not the same as having depression.
Depression becomes a medical problem when it gets in the way of your day-to-day life. The feelings usually last for several weeks, or they keep coming back.
Depression can show up in different ways. Because symptoms of depression can appear to be physical rather than emotional, they can be missed or put down to something else.
When you are depressed you will probably have at least five or six of the symptoms below.

• Feeling unhappy most of the time (but may feel a little better in the evenings)
• Loss of interest in life and can't enjoy anything
• Finding it harder to make decisions
• Being unable to cope with things that you used to
• Feeling tired
• Feeling restless and agitated
• Loss of appetite and weight (some people find they do the opposite and gain weight)
• Taking longer to get to sleep, and then wake up earlier than usual
• Loss of interest in sex
• Loss of self-confidence
• Feeling useless, inadequate and hopeless
• Avoiding other people
• Feeling irritable
• Feeling worse at a particular time each day, usually in the morning
• Thinking of suicide

Depression can be mild, moderate or severe. Not all periods of depression go on for a long time. But without help, it can last for months or even years.

Causes of depression

Sometimes there seem to be obvious reasons for developing depression. Here are some examples of reasons why some people become depressed.

• Bereavement
• Divorce
• A traumatic event 
• Losing a job
• Family history of depression
• Some physical conditions
• Diet
• Street drugs and alcohol
• Seizures
• Side-effects of epilepsy medicines

The reasons for becoming depressed will be different for different people. For example, not everyone who experiences a bereavement or traumatic life event will go on to become depressed. People who have a condition that affects the brain or nervous system may become depressed. Epilepsy is a condition that affects the brain.

Epilepsy and depression

One in every three people with epilepsy will experience some form of depression during their lifetime. The links between epilepsy and depression are complicated. Having depression can be a risk for developing epilepsy. Many studies show that depression is more common in people with epilepsy than in people who do not have epilepsy.
Living with epilepsy can affect people in different ways. Everyone reacts differently. You might find it hard to accept a diagnosis of epilepsy. And it might take time to adjust to the changes in your life.
When you have epilepsy, there might be several things that could contribute to you becoming depressed. Here are some examples.

• Continuing to have seizures
• Being afraid of having seizures 
• Having side-effects from epilepsy medicines
• Having problems at work
• Having social or relationship or family problems

Seizures and depression

For some people, depression is linked to seizures. It can be experienced before, during, or after a seizure. Depression might happen hours before a seizure. Some people with epilepsy also experience a sudden worsening of their mood as the first part of their seizures (during their aura). This is more common in people with temporal lobe epilepsies. When depression happens after a seizure, it might not start for several hours. It could be delayed for up to seven days afterwards.
People whose seizures are not controlled by epilepsy medicines have a higher risk of experiencing depression.
Evidence suggests that depression can also make epilepsy worse. Being depressed could cause your sleep patterns to be disturbed. Or it may cause you to miss doses of your epilepsy medicines. Both of these things can be a trigger for seizures for some people.

Epilepsy medicines and depression

Most people with epilepsy do not experience any problems with their mood or emotions as side-effects of taking epilepsy medicines.
However, for some people, their epilepsy medicines can affect their mood, and cause depression as a side-effect. People who have a personal or family history of depression are more at risk of this.
These are the epilepsy medicines said to carry the highest risk of causing depression.

• Vigabatrin
• Phenobarbital (phenobarbitone)
• Levetiracetam
• Zonisamide
• Topiramate
• Tiagabine
• Clonazepam

Depressive episodes may be dose-related with some epilepsy medicines but not others. This means that the higher the dose you are taking, the more likely you are to become depressed. People who take more than one type of epilepsy medicine may have an increased risk of experiencing depression.
If you feel that your epilepsy medicines are affecting your mood or emotions, it is advisable to talk to your family doctor or epilepsy specialist.
It is important that you do not just stop taking your epilepsy medicines. If you suddenly stop taking them, this could cause you to have more frequent and severe seizures.

Treatments for depression

Many people with mild depression will get better without treatment. However, some people need treatment for their depression. The treatment you are offered for your depression will depend on how seriously it is affecting you. Some people will need a combination of treatments, including psychological treatments or anti-depressant medicines.
Psychological treatment is a general term. It is used to describe when you meet with someone trained to talk about feelings. It helps you to look at your thoughts and feelings and how these affect your life and your wellbeing.
If you are very unwell, and treatments don’t help, or you are considered to be at risk of suicide, you could be admitted to hospital.
You might see different people for the treatment of your depression and the treatment of your epilepsy. If this is the case, there should be a care plan to say who is responsible for different parts of your treatment and care. Your treatment and care should take into account what you want and need.
Below are some guidelines for the treatment of depression that are recommended by the National Institute for Health and Care Excellence (NICE).

Active monitoring

This is for mild depression. It means monitoring you while waiting to see if your depression goes away without treatment, which mild depression often does.

Cognitive behavioural therapy(CBT)

This is a type of psychological treatment. It has been proven to help treat depression in people with and without epilepsy.
The aim of CBT is to help look at and change any negative thoughts and feelings. It helps you to cope with life’s challenges better. CBT cannot remove your problems, but can help you manage them in a more positive way.
CBT has been shown to be very helpful at tackling problems such as depression. It is usually carried out with a therapist on a one-to-one basis, but can also take the form of:

• group therapy – with others who wish to tackle a similar problem, or 
• a self-help book – where you carry out exercises from the book, or 
• a computer program – known as computerised CBT (CCBT).

Counselling

This is another form of psychological treatment. It gives you the chance to talk through everyday issues that may be causing your depression, and looks at ways to resolve them.

Mindfulness-based cognitive therapy (MBCT)

This involves taking time to see what is happening around you, rather than going over your problems again and again. It is a way that people can change the way they think and feel about their experiences, and involves techniques like yoga and meditation. Mindfulness-based cognitive therapy is often done in groups.

Exercise

Regular exercise can be very effective in lifting your mood and increasing your energy levels. Exercise is something you can do for yourself but it is also recommended as a treatment for depression in the NICE guidelines. Some family doctors will give you a prescription for exercise, referring you to a programme at a local gym or health centre.

Complementary treatments

Some people use complementary treatments to try and improve their quality of life. Treatments include acupuncture, massage, herbal treatments, homeopathy, and aromatherapy. Some people with depression find these treatments helpful.
It’s really important to speak with your doctor or epilepsy nurse before you try any complementary or alternative treatments. This is because some treatments can trigger seizures for some people with epilepsy. And these treatments may interact with your epilepsy medicines. An example of this is St John’s Wort, a herbal treatment that you can buy without a prescription at a pharmacy. It is used to treat people with mild depression. Information from the British National Formulary says that people who take epilepsy medicines should not take St John’s Wort. This is because it can affect the way epilepsy medicines work. This could mean you have more seizures than usual.

Anti-depressant medicines for depression

Anti-depressant medicines can be useful for some people who find it difficult to deal with the normal tasks of day-to-day life. They work by increasing the activity and levels of certain chemicals in the brain that help to lift a person’s mood.
Anti-depressants do not change your life directly but can help you overcome depression. They may give you more energy to tackle the difficulties you are facing and make it easier to take an active approach to solving any problems you face.
The choice of anti-depressant medicine will depend on a number of things including:

• what epilepsy medicines you are taking and any possible interactions
• the effect they may have on your seizures.

Some anti-depressants have been linked to an increase in seizure frequency. This has led to an under treatment of depression in people with epilepsy. However, there is research to suggest that most anti-depressant medicines are safe for people with epilepsy, when used at the right doses. These types of anti-depressants are known as serotonin re-uptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs). Research also suggests that these types of anti-depressant medicines work well in people with epilepsy, regardless of how often they have seizures.
Psychological treatments and anti-depressant medicines can work well together, but psychological treatments alone can also work well for some people. This is particularly true for people with epilepsy who feel that they are already taking enough medicines, and don’t want to take any more.

Managing epilepsy and depression

You might think that it’s normal to feel depressed because you have epilepsy.
Many studies show that if you have epilepsy you are more likely to develop depression than someone who doesn’t have epilepsy. However it doesn’t mean that it’s your fault that you are depressed or that you just have to live with it.
It’s important to get good treatment and care for your epilepsy. But it is also important that we all look after our emotional health and wellbeing too.
Our bodies and mind are connected. Being diagnosed and living with epilepsy might affect how we feel emotionally. How we feel emotionally can affect the way we cope with epilepsy as well as how we cope with our day-to-day lives.
There are things that you can do. Here are some things that might help.

Seek help

We all need help sometimes. If the negative feelings you are having don’t go away, or they are affecting your everyday life, you might need some support. This could be from a family member, a friend, your family doctor, epilepsy specialist or epilepsy nurse.
If you are feeling that life is too much, it is important to get help straight away.
Either see your family doctor or call NHS Direct on 0845 4647. (This service is gradually being replaced by NHS 111 service.)
You can also contact the Samaritans. They offer 24 hour confidential emotional support for people who are experiencing feelings of distress or despair, including those which may lead to suicide.
The Samaritans
Tel: 08457 90 90 90
Email: jo@samaritans.org
Website: samaritans.org.uk

Learn about your condition

Try to learn about your epilepsy. You could speak to your family doctor, epilepsy specialist or epilepsy nurse about any questions you have. You could also contact Epilepsy Action’s freephone helpline number and speak to an Advice and Information Officer.
You may want to overcome any feelings of isolation by going out and talking to other people about your epilepsy and your feelings. Epilepsy Action has an extensive network of branches, coffee and chat groups and volunteers throughout the UK. They provide local support to people with epilepsy, their family and friends and carers.
For more information about any of these services, contact the Epilepsy Helpline or visit epilepsy.org.uk/about/local-services
You may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. Hopefully, you will be able to talk to others in a similar situation.

Be actively involved in your treatment and care

The National Health Service (NHS) run self-management programmes. They aim to help increase your confidence, improve your quality of life and show you how to manage your condition better.
For more information about self-management programmes visit the NHS choices website: nhs.uk

Manage your condition as effectively as possible

Research shows that people with long-term conditions who take more control of their health have a much better quality of life.
Try to focus on the things you can control.

• Take your epilepsy medicines on time.
• Have a good sleep routine.
• Take regular exercise.
• Eat and drink sensibly.
• Take time out regularly to relax or do something you enjoy.

Organisations for information and support

Counselling Directory
Has details of qualified counsellers and psychotherapists.
Website: counselling-directory.org.uk 
Depression Alliance
A charity for people affected by depression. Runs self-help groups.
Tel: 0845 123 23 20 (UK only)
Email: information@depressionalliance.org
Website: depressionalliance.org 
Mind
Helps people to take control over their mental health. They offer advice and support.
Tel: 0300 123 3393 (UK only)
Email: info@mind.org.uk
Website: mind.org.uk
NHS choices
The country's biggest health website and gives all the information you need to make choices about your health.
Website: nhs.uk
Rethink Mental Illness Provide expert, accredited advice and information to everyone affected by mental health problems.
Tel:0300 5000 927 (UK only)
Email: advice@rethink.org
Website: rethink.org
Saneline
A national out-of-hours telephone helpline, offering emotional support and information for people affected by mental health problems.
Tel: 08457 767 8000 (UK only)
Email: sanemail@sane.org.uk
Website: sane.org.uk
If you would like to see this information with references, visit the Advice and Information references section of our website. See Depression and epilepsy.

Risks of having epilepsy

Many people with epilepsy lead full lives. Their seizures are brief and don’t cause them any particular problems. They just get on with life. But it’s important to know that there is a small risk of dying because of epilepsy. People can die as a result of a seizure. Or they can die as a result of an accident that happens because of a seizure. Sometimes, the cause of the epilepsy may be to blame. For example, someone may have damage to their brain. In some cases, there is no clear reason why a person with epilepsy has died. When this is the case, it is called sudden unexpected death in epilepsy (SUDEP).
Taking your epilepsy medicine regularly, and talking to your doctor about any concerns you have about your epilepsy, can help to reduce the risks. Epilepsy Action has more information about ways to reduce the risks of SUDEP.

Introduction 

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. This information is about one significant risk, and that is sudden death due to epilepsy.
It is important to remember that the risks of dying because of epilepsy are low. There are also things you can do to make the risks even lower.
Many people who knew somebody who died due to SUDEP have told us they wished they had known more about the risks, before the person died. Therefore, the aim of this information is to raise awareness of the risk of sudden death associated with epilepsy. It also offers practical advice and suggestions on ways to reduce this risk.
There have been many studies carried out into SUDEP and research is continuing. However, SUDEP is still not fully understood by medical professionals. In this information, we can only tell you about the current understanding of SUDEP.
If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.

The definition of sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.

The causes of SUDEP

SUDEP has been shown to be connected with seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.

Risk factors of SUDEP

It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected by SUDEP. However, some people with epilepsy have a higher risk of SUDEP than others. The single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure that causes the person to lose consciousness. Their body goes stiff and then starts jerking.
SUDEP has occurred in people who had seizures very often, and also in people who did not have them very often. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP if you are seizure-free is very, very low. And, SUDEP is rare in people who are newly diagnosed with epilepsy.
Any of the following things are thought to increase a person’s risk of SUDEP.

• Having uncontrolled generalised tonic-clonic seizures
• Not taking epilepsy medicines as prescribed
• Having seizures that are not controlled by epilepsy medicines
• Having sudden and frequent changes to epilepsy medicines
• Being a young adult (in particular male)
• Having sleep seizures
• Having seizures when alone
• Drinking large amounts of alcohol

Ways to reduce the risks of SUDEP if you have epilepsy

Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible. If your seizures are not controlled, here are some ways that you can manage your epilepsy, to try and reduce them.

• Always take your epilepsy medicines as prescribed.
• Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
• Make sure that you never run out of your epilepsy medicines.
• Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
• If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.
• Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures, or anything that triggers your seizures.
• Avoid situations which may trigger your seizures. Common triggers include forgetting to take epilepsy medicines, lack of sleep, stress and too much alcohol.
• If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.

Other ways to reduce risk

• If your seizures happen at night, consider using a bed alarm, which can alert another person if you have a seizure. This will enable the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)

For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.
Tel: 0300 999 0004 (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk
The Disabled Living Foundation's website is called Living made Easy.
Telecare (alarms linked to a help centre)
Website: livingmadeeasy.org.uk/telecare
Bed alarms
Website: livingmadeeasy.org.uk/bedroom

• Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy.
• Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do. For example, you may choose to live with other people.
• Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research that proves this. If you think an anti-suffocation pillow would help you, please talk to your epilepsy nurse or epilepsy specialist. They will help you to decide whether an anti-suffocation pillow would be a good idea for you.
  For details of where you can buy anti-suffocation pillows, contact Epilepsy Action.

Ways to reduce the risks of SUDEP for someone who is having a seizure

You may be with someone when they have a seizure which causes them to lose consciousness. Here are some things you can do to help them recover. Your actions may also reduce the risks of SUDEP.
Remember ACTION for tonic-clonic seizures:

A	Assess Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C	CushionCushion their head (with a jumper, for example) to protect them from head injury
T	Time Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I	IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O	OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N	NeverNever restrain the person, put something in their mouth or try to give them food or drink

The recovery position

Call for an ambulance if...

• You know it is the person’s first seizure, or
• The seizure continues for more than five minutes, or
• One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
• The person is injured during the seizure, or
• You believe the person needs urgent medical attention

Further information about SUDEP

SUDEP Action
SUDEP Action offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.
Tel: 01235 772 852
Website: www.sudep.org
This information was written by Epilepsy Action’s advice and information team with guidance and input from people living with epilepsy and medical experts.
If you would like to see this information with references, visit the Advice and Information references section of our website. See SUDEP.

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Safety

It’s a good idea to think about things you can do to make life with epilepsy as safe as possible. Because most things carry some risk, it’s impossible to live a risk-free life. But there are usually ways to lower risks. Sometimes it’s just a matter of taking a few extra steps to make an activity safer.
How you lead your life is your decision. But if your epilepsy is not controlled – even if you only have one seizure a year – you need to think carefully about risk. For example, having a seizure in the bath would put you at risk of drowning. You can reduce this risk by having a shower instead.
If you think there are things you can do to make your home safer if you had a seizure, you may be entitled to some help. Your local social work office will be able to tell you more.

Introduction

Like many people with epilepsy and their families, you may have concerns about your safety when you have a seizure. Seizures can put you at risk of accidents that can cause:

• Bruises
• Burns and scalds
• Cuts
• Drowning
• Fractures
• Head injuries

Epilepsy Action believes that it is very important that you are aware of these risks. This is because many of them can be prevented or reduced with a few, often simple, measures. This information has suggestions for ways you can make sure you are safer if you have a seizure.
Not all the suggestions will be right for everyone. For example, you may be seizure-free. Or, you might get a warning before you have a seizure and be able to remove yourself from dangerous situations. However, if your seizures are not fully controlled , you may find many of these suggestions helpful.
Some of these suggestions may be quite difficult, or expensive, for you to be able to put in place by yourself. You may be able to get some help with making your home safer from your local authority, if they believe that you need it. Contact your local social services agency or local authority for more information. You will find their details online, or in The Phonebook.

Safety around the house

General safety at home

Suggestions for reducing the risk of burns and scalds

• Make sure there are no trailing wires attached to appliances that could cause a fire or burns if pulled over. Cable tidies, available from DIY (hardware) stores, can keep wires out of the way
• Use guards on heaters and radiators to stop you from falling directly onto them
• Use a fire guard that is fixed to the wall, so it won’t move out of place if you fall on it Put free-standing heaters in places where they are least likely to be knocked over
• Use a sensor hairdryer that turns itself off when it is put down
• Don’t use heated appliances if you are alone – this includes hair dryers, irons, hair straighteners and curling tongs
• Switch off heated appliances immediately after use and place them out of reach until they are cool
• Have carpets with high wool content rather than high synthetic content, to reduce the risk of friction burns
• Install smoke detectors, which can help be helpful in two ways:
• They may alert other people if food is burning because you are having a seizure
• They will let you know that food is burning if you have memory problems and sometimes forget what you are doing

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

• Avoid having very hard floor surfaces - more cushioned flooring, such as carpets, linoleum, cork and rubber, will provide a softer landing if you fall
• Keep stairs clear of obstructions at all times, to avoid tripping
• Put a soft rug or carpet at the bottom of the stairs, to cushion any falls. Cover any edges that are sharp or stick out, for example on furniture. Edge and corner guards are available from many different retailers.
• Use toughened safety glass or double glazing in windows or doors, or cover ordinary glass with safety film – contact your local glass merchant or DIY (hardware) store for more information
• Make sure that any wide-opening upstairs windows or doors from upper balconies have suitable locks, so you can’t fall from them
• Make sure there are no trailing wires that you could trip over. Cable tidies, available from DIY (hardware) stores, can keep wires out of the way
• Where possible, use cordless versions of things like irons and kettles
• For electrical items with long wires, use coiled leads, so you don’t trip over them

In the bathroom

If you have seizures, it is important to take extra care when bathing, because there is a risk of drowning during a seizure.

Suggestions for reducing the risk of drowning

• Have a shower instead of a bath - it’s safer because the water runs away
• Ask somebody to stay in the bathroom with you, or to wait outside the door, so they can hear if you have a seizure
• Put ‘engaged/vacant’ signs on the bathroom door, instead of using locks
• Have a bathroom door that opens outwards, or folds or slides open and closed. Then, if you fall against it during a seizure, you won’t block someone from getting in

In the bath

• Keep the water depth shallow and turn off the taps before you get in, or
• Don’t put the plug in, but sit in the bath with the water running from the taps or a shower attachment

 In the shower

• Have a shower cubicle with a flat floor rather than a shower tray, so that water can’t collect

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

• Make sure that any fittings are as flush to the wall as possible, to reduce the risk of banging against them if you fall
• Have a separate shower cubicle, rather than a shower attachment over the bath
• Use a shower screen made of plastic or safety glass, or a shower curtain
• If the shower is over the bath, cover the taps with protective material, such as a thick towel, to avoid injury if you fall
• If possible, sit down in the shower rather than stand up, to avoid injuries if you fall

Suggestions for reducing the risk of scalds

• Make sure that the temperature controls work well and that there is a safety ‘cut-off’ in the shower

In the kitchen

Suggestions for reducing the risk of burns and scalds

• Use a microwave rather than a gas or electric cooker
• Place saucepans on the back burners and with the handles away from the edge of the cooker, so you can’t knock them over
• Take plates or dishes to the cooker, rather than carrying hot pans to the table
• Use a toaster instead of a grill to avoid the risk of burning food
• Use kettle tippers and teapot pourers, to avoid the risk of spilling hot liquid

In the bedroom

If you have seizures when you are in bed, here are some suggestions for making your bedroom safer:

Suggestions for reducing the risk of burns and scalds:

• Avoid putting your bed next to a radiator

Suggestions for reducing the risk of cuts, bruises, fractures and head injuries

• Avoid putting your bed against a wall or next to a radiator, to prevent knocking your limbs
• Put cushions, pillows or a mattress on the floor around the bed, to reduce injuries if you fall out of bed
• Choose a low bed, so there is less distance to fall to the floor
• Keep sharp-edged objects and furniture away from the bed

In the garden

Suggestions to reduce the risk of burns and scalds

• Avoid getting so close to bonfires or barbecues that you could fall on them during a seizure
• If you sometimes wander during a seizure, ask someone to stay with you when you are near a bonfire or barbecue

Suggestions to reduce the risk of drowning

• Don’t have ponds or pools
• If you do have ponds or pools, make sure they are securely fenced off when you are alone in the garden

Lifts

If you have mobility difficulties, you may need to use a stair lift or vertical lift. Neither of these options is risk-free if you have seizures, and there is no perfect solution. To a certain extent, it is a matter of arriving at a compromise between the safest option and what is practical.

Vertical lifts

• Where possible, because they are likely to be small, confined spaces, these should have a padded interior to cushion the blow if you fall

Stair lifts

• Most stair lifts have simple straps which you should use, as they are not likely to cause injury if you have a seizure
• You may need to wear a full harness to prevent you from falling, but be aware that this could cause injury during a seizure. This may, however, be safer than falling from the stair lift

Sport and leisure

Most sport and leisure activities are possible for people with epilepsy, as long as common sense precautions are taken, where relevant. Sports on or near water, or at heights, may need extra safety measures or supervision.
Epilepsy Action has more information about sport and leisure.

Safety equipment

Anti-suffocation pillows

Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research to prove this. If you are thinking about buying an anti-suffocation pillow, it is advisable to discuss this with your epilepsy nurse or epilepsy specialist.
For details of where you can buy anti-suffocation pillows, contact Epilepsy Action.

Alarms

There are different types of alarms that can be helpful for some people with epilepsy.
These include:

• Baby intercoms, which can pick up sound
• Bed alarms that can sense different things when someone is asleep, such as unusual sound, movement or dribble
• Fall alarms which can be activated when someone falls to the ground
• Telephone alarms, which can be operated by remote control by someone who needs help

Before choosing an alarm, you need to consider whether they are necessary and whether they would be useful. For example, a fall alarm can only be useful if somebody is nearby to hear it. A baby intercom can only pick up noise, not movement.
For information and advice about alarms and where you can get them, you can contact the Disabled Living Foundation’s equipment helpline.
Tel: 0300 999 0004  (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk
The Disabled Living Foundation's website is called Living made Easy.
Telecare alarms (alarms which are linked to a help centre)
Website: livingmadeeasy.org.uk/telecare
Bed alarms
Website: livingmadeeasy.org.uk/bedroom

Epilepsy identification

You may choose to carry or wear some form of identification, especially if you are out on your own. This can include an ID card or medical identity jewellery. Please contact Epilepsy Action for more information.

‘In Case of Emergency’ scheme (ICE)

This is a scheme that helps medical staff to quickly find out who they can contact in an emergency. This could be helpful for you if you have a seizure and are not able to communicate clearly.
On your mobile phone contact list, enter the word ICE in front of the name of the person you would like to be contacted. ICE stands for In Case of Emergency.
Not everyone will know about this scheme, so it isn’t something to rely on.

Parents with epilepsy caring for young children

If you are a parent with epilepsy you will be concerned about your children’s safety if you have a seizure. Besides following general safety measures for all parents of young children, there are other things you can do to reduce the risk of injury and accidents. These include, for example, fitting a safety brake to the pram, and special ways of feeding, bathing and looking after your baby or young child.
Epilepsy Action has more information about looking after babies and young children when you have epilepsy.

Further information

Dan’s fund for burns
Provides help for people affected by burn injuries.
Tel: 020 7262 4039
Website: dansfundforburns.org
ROSPA (Royal Society for the prevention of accidents)
Promotes safety and the prevention of accidents at work, at leisure, on the road, in the home and through safety education.
Tel: 0121 248 2000
Website: rospa.com

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Reducing the risk of seizures

One good way of making life safer is to do everything you can to not have seizures.
Here are some ways to keep seizures to a minimum.

• If you know there are things that trigger your seizures, try to avoid them
• Find ways to deal with stress, when you can’t avoid it altogether.
• Try to have regular sleeping patterns.
• Don’t forget to take your epilepsy medicine. 
• Never run out of your epilepsy medicine.

Leisure activities

If there are things you like to do in your spare time, having epilepsy shouldn’t usually stop you. If you have seizures, you might need to take some extra safety measures. For example, if you go swimming, take someone with you who knows what to do if you have a seizure in the water.

Sport and leisure activities and epilepsy

With the right support and the relevant safety precautions, there is little that someone with epilepsy should need to avoid. Many people with epilepsy have their seizures completely controlled by epilepsy medicine and don’t need to take any greater safety precautions than anyone else. However it is always a good idea to follow the rules and recommendations in terms of safety equipment.
Some people say that when they are active, they are less likely to have seizures. So, for some people with epilepsy, taking part in sport and leisure activities can really benefit their epilepsy. A very small number of people with epilepsy find that doing strenuous exercise increases their likelihood of having seizures.

Telling people about your epilepsy

To take part in some sports or activities you may need to complete a medical form. This information should only be used to help the organiser do a risk assessment and, if needed, make any reasonable adjustments. Knowing the answers to the issues under ‘talking to your doctor’ would help with a risk assessment. However, if your epilepsy is unlikely to affect the safety of yourself and others, you may feel you don’t need to tell anyone about your epilepsy. 

If you feel you are being unfairly prevented from taking part in a sport or leisure activity because of your epilepsy, check our information on the UK equality laws and epilepsy.
If you live outside the UK, find out about similar laws in your country by contacting your local epilepsy organisation.

Talking to your doctor

It’s a good idea to speak to your doctor before trying a new sport or activity, particularly if your seizures are uncontrolled. These are some of the things you might want to discuss with your doctor. The answers would help someone doing a risk assessment if necessary:

• How often you have seizures
• What happens when you have a seizure
• If you have a warning before a seizure
• How long your seizures usually last
• If there are things you know trigger your seizures (for example flashing lights, excitement, and disturbed sleep)
• What risk there could be for you and other people if you had a seizure during the activity
• What support would be available if you needed it

Boxing

If you have epilepsy and live in the UK, you can box unless you have had a seizure in the last three years.

Climbing

Heights are a potential danger to anyone with epilepsy. This doesn’t necessarily mean that you shouldn’t go climbing. But you will need to think carefully about your safety and that of the other people with you in any climbing group. If you are still having seizures, you may need to consider avoiding this sport, until you have better seizure control.
If people have poorly controlled seizures it would be best to seek medical advice before a climb involving high altitude. In particular, climbing fast to a high altitude may increase the risk of someone having a seizure.

Cycling

The normal safety precautions for cyclists include wearing high-visibility clothing and protective headgear. These precautions are particularly important if you have epilepsy and want to cycle. If you still have seizures, try to avoid cycling on busy roads and by rivers or canals. If you have frequent seizures, you may decide to avoid cycling on public roads altogether, until your seizures are under better control.

Extreme sports

Cave diving, hang gliding, parachuting, snowboarding and bungee jumping are just a few examples of extreme sports. All extreme sports have an element of danger. So it would be particularly important to check whether it would be safe enough to do any of these activities if you did not have seizure control. Whichever sport you choose, there is usually a governing body that sets the safety regulations.
 Contact Epilepsy Action for further information.

Fishing

If your seizures are completely controlled, you need to consider the general safety precautions for fishing. If your seizures are uncontrolled, never fish alone and make sure the person with you knows what to do if you have a seizure. Wearing a life jacket is essential if there’s a danger of falling into the water. And using a longer line may mean you don’t have to sit too near the water’s edge.

Gym

If your seizures have been totally controlled for some time, you should be able to use any piece of gym equipment. If you are still at risk of having seizures, there may be equipment that you shouldn’t use in order to avoid injury to yourself or other people. You could discuss this with the staff at the gym and ask for a safety assessment.

Hiking and rambling

There’s no reason why having epilepsy should stop you going hiking or rambling. If your seizures are not controlled, it’s a good idea to go with someone who knows what to do if you have a seizure. The Ramblers Association has information on safety aspects of rambling and hiking for people with epilepsy.
For further information on Rambling and epilepsy contact the Ramblers Association.

Horse riding

Horse riding can be safe for people whose seizures are well controlled, or who always have a long enough warning before a seizure. If your seizures are not well controlled and could cause you to fall off the horse, you may still be able to ride. However, you would need to be closely supervised by someone walking alongside the horse.

Jacuzzi, sauna and steam room

There is no reason why you shouldn’t use these. However, if your seizures are not well controlled, you should have someone with you who would know how to help you, if you have a seizure.

Martial arts

If you have seizures, it would be best to ask your doctor for advice before practising martial arts. Whatever type of martial art you choose, you should make sure that the people in charge know about your epilepsy and what to do if you have a seizure.

Running and jogging

If you go running or jogging, you may wish to consider taking some extra safety precautions. These could include keeping to well-lit and traffic-free routes. It is best not to run by rivers or canals. If your epilepsy is not controlled, you should ideally go with someone else and/or have a mobile phone with you to call for help if necessary.

Scuba diving

It is recommended by the British Sub-Aqua Club that you are free from awake seizures and off medication for five years if you want to go scuba diving. If you only have seizures while asleep, you should be seizure-free and off medication for three years.

Skiing

Cross country and downhill skiing can both be enjoyed by many people with epilepsy. However, if your seizures are not well controlled, you should avoid downhill skiing. This is because it would be dangerous if you had a seizure. If you are going cross country skiing, go with someone who knows what to do if you have a seizure.

Squash

There are no specific safety precautions. But if you are still having seizures, it would be a good idea to check with your doctor before you take up squash. In addition to possible danger from the equipment if you had a seizure, squash is particularly strenuous.  Strenuous activity can trigger seizures in some people.

Swimming

If your seizures are completely controlled, you don’t need to take any greater safety precautions than anyone else. If you are still having seizures you need to consider safety precautions. For example:

• Seek advice from your doctor or epilepsy nurse. Discuss issues such as your seizure type(s), frequency, and any other factors that could affect your safety when swimming
• It is always a good idea to have a companion in the water with you
• Talk to the staff at your local swimming facilities about any special requirements you may have
• Use a floating/buoyancy aid
• Think safety at all times
• If there is a lifeguard or pool supervisor present, make them aware of your epilepsy
• If there’s no qualified lifeguard present, don’t swim deeper than the shoulder height of the companion swimming with you
• Make sure that your companion knows what to do if you have a seizure and is strong enough to help you. (See how to deal with a seizure in the water)
• Practise what to do if you have a seizure with your companion. This will boost your confidence and theirs
• You could ask a lifeguard to show you how to deal with a seizure that happens in the water
• Don’t swim if you are feeling unwell
• Avoid overcrowded situations, as it might be difficult for others to notice if you have a seizure

How to deal with a seizure in the water

Tonic-clonic seizures - basic guidelines

• From behind, tilt the person’s head so it is out of the water
• If possible, move the person to shallow water, while holding their head above water
• Don’t restrain their movements or place anything in their mouth
• Once jerking movements have stopped, move them to dry land
• Place them on their side to recover
• Stay with them until they feel better

Absence and partial seizures – basic guidelines

Protect the person from danger, for example by guiding them away from deep water or by holding their head above the water. When they recover, check if they need to get out of the water as they may feel confused and need to rest.

When to call an ambulance

• When you believe the person has swallowed or breathed in water, even if they appear to be fully recovered, or
• When the person goes from one seizure to another without regaining consciousness between seizure, or
• When the seizure lasts longer than is usual for the person or, if in  doubt, when the seizure continues for more than five minutes, or
• When the person has been injured

Team sports (including football, rugby and netball)

There is no evidence to suggest that you should avoid team sports, as long as you follow the normal safeguards. These safeguards may include wearing the proper head protection as recommended by the official sporting body. If your epilepsy has been caused by a head injury, your doctor may advise you to avoid these types of sports.

Theme parks

Some people with epilepsy have concerns about safety on rides. Providing there are general safety precautions in place, rides do not have to be avoided. If you have frequent and/or severe seizures it would be advisable to check with your doctor.
Some attractions may involve flashing lights and these may need to be avoided by people with photosensitive epilepsy.

Water sports in general

Water sports can be enjoyed by people with epilepsy whose seizures are well controlled. If your seizures are completely controlled, you need to consider the general safety precautions for that sport. If your seizures are uncontrolled, you need to consider safety issues related to your seizures. For example:

• Some water sports can be hazardous and may be best avoided
• Don’t do water sports on your own
• Make sure someone with you knows about your epilepsy and how to rescue you if necessary
• Wearing a life jacket is essential if there’s a danger of falling into the water

Yoga

Yoga can be of benefit to some people with epilepsy. It is said to help people become balanced in mind and body and to aid relaxation. There are different types of yoga available. There is some evidence to suggest that strong pranayama (breathing control) and trataka (gazing at a meditation object) should be avoided by people with epilepsy, as they could trigger a seizure. More information about yoga is available from the British Wheel of Yoga (‘Sports England’ recognised national governing body for yoga).
More information about going to the cinema and epilepsy
If you would like to see this information with references, visit the Advice and Information references section of our website. See Sport and Leisure.

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Code: 

B014.03

Alcohol and illegal drugs

Some people with epilepsy drink alcohol and some people don’t. It’s up to you to decide if you’re going to drink alcohol. But bear in mind that for some people, alcohol can make seizures more likely.
There is no control over what goes into illegal drugs. They can be dangerous and they can trigger seizures.

Introduction

The information in this section is in two parts. The first part gives some facts about drinking alcohol if you have epilepsy. The second part looks at the risks of having seizures because of heavy and regular alcohol drinking.

Drinking alcohol if you have epilepsy

Several studies show that drinking small or modest amounts of alcohol does not increase the risk of having seizures. But if you have a history of alcohol abuse, even drinking small amounts could increase the number of seizures you have. This is also the case if you have had seizures related to drinking alcohol in the past.
Drinking more than modest amounts of alcohol in 24 hours can increase the risk of having seizures. For most people, the risk is highest when the alcohol is leaving their body after they have had a drink. This risk is highest between six and 48 hours after they have stopped drinking.

Drinking alcohol when you take epilepsy medicine

Alcohol can reduce the amount of some epilepsy medicines in the body. This can make you more likely to have seizures. Alcohol can also increase the side-effects of epilepsy medicines. And some people say that drinking alcohol when they are taking epilepsy medicine makes them feel drunk quicker.
Whatever you decide to do about drinking alcohol, it’s important always to take your epilepsy medicine as prescribed.

Alcohol causing seizures

If you are ‘alcohol dependent’, it means you are likely to drink heavily. You may drink at any time and for days at a time. There is a real risk of having seizures if you stop drinking suddenly after a long session of heavy drinking. These seizures are known as ‘alcohol withdrawal seizures’.
If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Suddenly withdrawing from alcohol can increase your risk of SUDEP.
If you want to cut down your drinking, it’s important to do this gradually, to reduce the risk of alcohol withdrawal seizures. It’s also possible to get treatment to stop seizures happening during alcohol withdrawal. Once you have stopped drinking, alcohol withdrawal seizures should not come back, as long as you don’t start drinking again.
Epilepsy Action has more information about epilepsy, seizures, epilepsy medicines and SUDEP.

Further information and getting help

If you are worried you are drinking too much, and would like to do something about it, talk to your family doctor. They may be able to refer you to someone who can give you support, and help you to safely reduce the amount of alcohol you drink.
Organisations that offer advice about cutting down on alcohol:
Alcoholics Anonymous:
Website: alcoholics-anonymous.org.uk
Drink Aware:
Website: drinkaware.co.uk
NHS Choices:
Website: nhs.uk
If you would like to see this information with references, visit the Advice and Information references section of our website. See Alcohol and epilepsy.

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Driving

There are laws about driving if you have a one-off seizure, or if you have epilepsy. You may have to stop driving for a time. These laws are there to make sure that all road users are as safe as possible.

Introduction

This is information about driving for people with epilepsy in the UK. It covers the rules for holding a driving licence. And it explains how the agencies that issue driving licences work. It also tells you what help with transport costs is available, if you can’t drive because of your epilepsy.

Driving agencies and types of driving licence

• About the driving agencies
• Which type of driving licence do I need, to drive different vehicles?

Am I allowed to drive with a group 1 licence?

• I only ever have seizures when I am awake, and they affect my consciousness
• I only ever have seizures when I am awake, but they do NOT affect my consciousness
• I only ever have seizures when I am asleep
• I have seizures when I am both awake and asleep
• I have had an isolated seizure
• I have had a provoked seizure

Am I allowed to drive with a group 2 licence?

• I have had two or more seizures
• I have had an isolated seizure

Reporting seizures to the driving agency

• I have had a seizure. Do I need to stop driving and inform the driving agency?
• Why should I tell the driving agency that I have had a seizure?
• How do I inform the driving agency that I have to stop driving?

Applying and reapplying for your driving licence

• How can I apply for a driving licence for the first time?
• I am allowed to drive again. How do I get my licence back?
• When will I be able to start driving again?
• How long will my driving licence be issued for?

Changing and withdrawing epilepsy medicines

• I am changing my epilepsy medicine. Do I need to stop driving?
• I am withdrawing my epilepsy medicine. Do I need to stop driving?
• What happens if I have a seizure while I am changing or withdrawing my epilepsy medicine?

Appealing against decisions made by the driving agencies

• The driving agency has said I can’t drive, but I don’t agree. What can I do?

Transport costs and insurance

• I am not allowed to drive because of my epilepsy. Can I get any help with transport costs?
• Will having epilepsy affect my car insurance?

Driving for a living

• Am I allowed to drive a taxi, forklift truck or farm machinery?

Driving in another country

• Can I drive in other countries with a UK driving licence?
• Can I drive in the UK with an overseas driving licence?

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Education

You should have the same choice of school or college as any other student. Education is covered by the equality laws, which means you should not be discriminated against because of your epilepsy. You should also have access to extra support at school and college if you need it.

Education

Welcome to the education section of our website. We hope you will find information and resources to help with all aspects of education, whether you are a member of teaching staff, a parent or carer or a student wanting more information.

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

 

All jobs, except the armed forces, are open to people with epilepsy. There may be some jobs you can’t do if your seizures mean you or others would be put at risk. Examples are police officer, fire fighter and working at heights.
The equality laws mean it is against the law for someone to treat you unfairly at work because of your epilepsy.
If you can’t drive because of your epilepsy, you might find it difficult to get to work. If you are not able to use the bus or train, the Access to Work scheme (through Jobcentre Plus) may help with the costs of taxi travel. Go to www.direct.gov.uk
More information on work is available from Epilepsy Action.

Insurance

If you are taking out insurance, you may be asked questions about your health. If you are, you will need to be honest about your epilepsy. If you’re not, you may not be fully insured. There are special rules for insurance under the equality laws. Insurers can charge more for an insurance policy, if they think there is a higher risk of someone making a claim. They can even refuse to insure someone. But they must look at each case individually.
More information on insurance is available from Epilepsy Action.

Help available

If you have epilepsy you can get free prescriptions. You may also be able to get cheaper, or free, bus and rail fares. If your epilepsy affects your everyday life, you may be able to get some benefits.
More information on entitlements and benefits for people with epilepsy is available from Epilepsy Action.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.