Living with

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

Controlling your seizures

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

Take your medicine

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

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

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

You might need to try several AEDs to find one that works for you and does not cause troublesome side effects.

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

Identify and avoid seizure triggers

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

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

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

For example, it might help to:

• deal with stress
• avoid becoming too tired – find out about how to fight tiredness
• cut down on alcohol

Have regular reviews

You'll have regular reviews of your epilepsy and treatment. These are usually carried out by a GP, but sometimes may be done by your epilepsy specialist team.

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

These appointments are a good opportunity to talk to your doctor about how you feel your treatment is going and any problems you're having. For example you may want to ask advice about side effects of your medicine.

Further information

• Epilepsy Action: living with epilepsy
• Epilepsy Society: living with a long-term condition

Staying safe

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

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

At home

Some tips to help you stay safe at home include:

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

Further information

• Epilepsy Action: safety advice for people with epilepsy

Sports and leisure

Most people with epilepsy can take part in sports and other leisure activities. There are some precautions you might need to take if your seizures are not well controlled.

For example, you may need to:

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

Further information

• Epilepsy Action: sports and leisure

Driving

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

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

When you can reapply for a licence depends on the type of seizure you had. For example, if you've had seizures that caused you to lose consciousness, you will not be able to reapply until you have not had a seizure for at least a year.

Further information

• GOV.UK: epilepsy and driving
• Epilepsy Action: driving
• Epilepsy Society: driving regulations for epilepsy

Pregnancy and contraception

Getting pregnant

Epilepsy does not affect your ability to have children and there's no reason why you cannot have a healthy pregnancy.

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

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

Read more about the risks of AEDs in pregnancy.

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

Men who take sodium valproate or valproic acid

Men who take sodium valproate or valproic acid and are planning to start a family within the next year or whose partners could get pregnant, should speak to a doctor about treatment options.

This is because there's a small risk that these medicines may cause learning or behavioural problems in your child if your partner becomes pregnant while you're taking them.

Do not stop taking sodium valproate or valproic acid without speaking to a doctor first.

Further information

• Epilepsy and pregnancy

Using contraception

If you do not want to get pregnant, it's important to use a reliable form of contraception.

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

Methods of contraception that are not affected by AEDs include the:

• intrauterine device (IUD)
• intrauterine system (IUS)
• contraceptive injection

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

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

Men who are taking sodium valproate or valproic acid should use effective contraception while taking it and for 3 months after stopping.

This is because there's a small risk these medicines may cause learning or behavioural problems in your child if your partner becomes pregnant while you are taking them.

Further information

• Epilepsy Action: contraception and epilepsy
• Epilepsy Society: contraception and epilepsy

School and education

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

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

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

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

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

Further information

• Guide to special educational needs (SEN)
• Epilepsy Action: parents of children with epilepsy
• GOV.UK: children with special educational needs

Work, money and benefits

Working with epilepsy

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

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

This may include things like:

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

Further information

• Epilepsy Action: work and epilepsy
• Epilepsy Society: work, employment and epilepsy

If you have to stop working

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

• If you have a job but cannot work because of your epilepsy, you're entitled to Statutory Sick Pay from your employer.
• If you do not have a job and cannot work because of your epilepsy, you may be entitled to Employment and Support Allowance.
• If you're aged 64 or under and need help with personal care or have walking difficulties, you may be eligible for Personal Independence Payment.
• If you're aged 65 or over, you may be able to get Attendance Allowance.
• If you're caring for someone with epilepsy, you may be entitled to Carer's Allowance.

Free prescriptions

If you take AEDs, you're entitled to get all your prescriptions (not just those for AEDs) free of charge.

Ask your doctor how to get an exemption certificate.

Further information

• Help with health costs
• Epilepsy Action: benefits for people with epilepsy in England
• Epilepsy Society: what help is available?

Support groups

There are 2 main epilepsy support groups that you might find a useful source of information and advice.

Epilepsy Action

Support available from Epilepsy Action includes:

• a directory of local epilepsy support groups
• a free helpline on 0808 800 5050
• an email helpline – helpline@epilepsy.org.uk
• an online epilepsy forum
• general advice and information about epilepsy

Epilepsy Society

Support available from the Epilepsy Society includes:

• a helpline on 01494 601 400
• an email helpline – helpline@epilepsysociety.org.uk

Sudden unexpected death in epilepsy (SUDEP)

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

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

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

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

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

Further information

• Epilepsy Action: SUDEP
• Epilepsy Society: SUDEP