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.
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 SamaritansTel: 08457 90 90 90
Email:
jo@samaritans.orgWebsite: 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 DirectoryHas details of qualified counsellers and psychotherapists.
Website:
counselling-directory.org.uk
Depression AllianceA charity for people affected by depression. Runs self-help groups.
Tel: 0845 123 23 20 (UK only)
Email:
information@depressionalliance.orgWebsite:
depressionalliance.org
MindHelps people to take control over their mental health. They offer advice and support.
Tel: 0300 123 3393 (UK only)
Email:
info@mind.org.ukWebsite:
mind.org.uk
NHS choicesThe 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.orgWebsite:
rethink.org
SanelineA 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.ukWebsite:
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 controlThe 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 alarmsWebsite:
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 burnsProvides 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
- 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.
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.ukDrink Aware: Website:
drinkaware.co.ukNHS 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
Am I allowed to drive with a group 1 licence?
Am I allowed to drive with a group 2 licence?
Reporting seizures to the driving agency
Applying and reapplying for your driving licence
Changing and withdrawing epilepsy medicines
Appealing against decisions made by the driving agencies
Transport costs and insurance
Driving for a living
Driving in another country
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.
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.
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.
