Living with epilepsy 

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

Know your triggers

The more you know about the things that trigger your seizures and how to avoid them, the less debilitating your epilepsy will be.

Keeping a diary document when you had any seizures and what you had been doing beforehand may help you work out if you have any triggers.

Take your medication

Anti-epilepsy medication controls seizures in around 70% of people. Working with your specialist to find the medication that suits you best, and taking it exactly as prescribed, is probably the most effective way to live well with epilepsy.

Missing out doses of medication may make you more likely to have seizures.

Regular reviews

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

These reviews should be carried out at least annually, although you may need more frequent reviews if your epilepsy is not well controlled.

Self-care

Self-care is an integral part of daily life. It involves taking responsibility for your health and wellbeing with support from those involved in your care.

Self-care includes what you do every day to stay fit and maintain good physical and mental health, prevent illness or accidents and care more effectively for minor ailments and long-term conditions.

People with long-term conditions can benefit enormously from being supported to self-care. They can live longer, experience less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

If you want to find out more about epilepsy self-management, you may want to talk to your GP or specialist about participating in the free Expert Patients Programme

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Healthy living hide

Regular exercise and a healthy diet are recommended for everyone, not just people with epilepsy. They can help prevent many conditions, including heart disease and many forms of cancer.

Try to eat a balanced diet, containing all the food groups, to give your body the nutrition it needs. Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue.

Drinking

Heavy drinking can cause seizures, as well as interact with anti-epileptic drugs (AEDs). AEDs can heighten the effects of alcohol, while alcohol can make the side effects of AEDs worse and make the medication less effective.

Heavy drinking is also associated with disrupted sleep patterns, and this may increase your chances of having a seizure. Drinking no more than the recommended daily limits may help reduce this risk.

The recommended daily limits for alcohol are three to four units for men and two to three units for women. A unit of alcohol is equal to about half a pint of normal strength lager or a pub measure (25ml) of spirits.

Read more about drinking and alcohol.

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Women and epilepsy  show

There are some aspects of epilepsy and epilepsy treatment that women with the condition need to be particularly aware of.

Contraception

Some anti-epileptic drugs (AEDs) can reduce the effectiveness of some types of contraception, including:

If you are sexually active and are not planning a pregnancy, ask your GP or epilepsy specialist whether your AEDs could affect your contraception.

You may need to ensure you or your partner use another form of contraception such as a condom or intrauterine device (IUD).

Also, the effectiveness of the AED lamotrigine may be reduced if you are taking the combined oral contraceptive pill.

Some AEDs have also been known to make the emergency contraceptive pill less effective. If you require emergency contraception, you may need an IUD. Your GP, family planning clinic or pharmacist should be able to advise you.

Pregnancy

There is no reason why women with epilepsy cannot have a healthy pregnancy. However, it is always preferable if the pregnancy is planned because there is a slightly higher risk of complications developing during pregnancy. With forward planning, these risks can be minimised.

The main risk is that some AEDs are known to increase the chances of a serious birth defect occurring, such as spina bifida, cleft lip or congenital heart disease. The risks depend on the type of AED and the dose you are taking.

The UK Epilepsy and Pregnancy Register can provide more information and advice about the use of AEDs during pregnancy.

If you are planning a pregnancy, talk to your epilepsy specialist. It may be possible to change the AED you are taking to minimise risks. Taking 5mg of a folic acid supplement each day can also help reduce risks of birth defects.

If you discover you are pregnant, do not stop taking your medicine. The risks to your baby from uncontrolled seizures are far higher than any risks associated with your medicines.

There are no risks associated with breastfeeding while taking an AED.

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Children and epilepsy show

Many children with well-controlled epilepsy can learn and participate in their school’s activities completely unaffected by their condition. Others may need extra support to get the most out of their time at school.

Make sure your child’s teachers know about their condition and the medication they need to control it.

Epilepsy is more common among children with learning disabilities and special educational needs. These children are entitled to extra help to overcome their difficulties. Each school will have at least one member of staff with responsibility for children with special educational needs. The law says that all state schools must do their best to meet special educational needs, sometimes with the help of outside specialists.

If your child needs a lot of extra help, the local education authority may carry out an assessment. This will outline the help your child needs, set a number of long-term goals, and ensure your child is regularly reviewed.

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Talk to others  show

If you have any questions about your condition, your GP or nurse may be able to advise you. You may also find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have information on these.

Some people find it helpful to talk to other people who have epilepsy, either at a local support group or in an internet chat room.

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Driving show

If you have a seizure, you have a legal responsibility to inform the Driving and Vehicle Licence Authority (DVLA).

You will usually not be able to hold a group one driving licence, required for private cars and motorcycles, until:

  • you have not had a seizure for one year, or
  • you have at least one year where you have only had seizures while asleep, and you have never had seizures when awake before, or
  • you have had seizures while awake in the past, but you have only had seizures while asleep for at least three years

You will also need to meet all the other minimum driving standards, including being able to read a number plate from 20 metres and having at least 6/12 vision (with glasses or contact lenses if necessary). Having 6/12 vision means you can see at six metres what someone with standard vision could see from 12 metres away.

The DVLA may issue a licence if your seizures have never caused you to lose awareness or affected your ability to safely control a vehicle.

You will not usually be able to hold a group two driving licence, required for heavy goods vehicles and passenger carrier vehicles that are more than 7.5 tonnes, until:

  • you have not had a seizure for the past 10 years and have not been taking AEDs during this period, and
  • your epilepsy specialist confirms there is no likelihood of seizures occurring

You will need to apply to the DVLA for the return of your licence. They will only return your licence when they are satisfied your epilepsy is under control. As part of this process, they may wish to contact your GP or epilepsy specialist. You will not have to retake a driving test when your licence is returned.

You have the right to appeal against their decision at a magistrates' court.

If you ignore these regulations, you will be liable for prosecution. Your GP also has a legal responsibility to inform the DVLA if it is felt that your driving is putting both you and others at risk.

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Money and finances  show

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:

Free prescriptions

If you take anti-epileptic drugs, you are entitled to get all your prescriptions (not just those for AEDs) free of charge. Ask your doctor how to get an exemption certificate.

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Sudden unexpected death in epilepsy (SUDEP) show

When somebody with epilepsy dies and no apparent cause can be found, it is known as sudden unexpected death in epilepsy (SUDEP).

Although the risk of SUDEP for someone with epilepsy is low, SUDEPs are estimated to cause between 500 and 1,000 deaths in the UK every year.

The exact causes of SUDEP are unknown, and it is not possible to predict who will be affected. One theory is that seizures could affect the person's breathing and heartbeat.

Things that may lead to SUDEP include:

  • having seizures which cause loss of consciousness and the body to go stiff and start jerking (tonic-clonic seizures)
  • poorly controlled epilepsy, such as not using anti-epileptic drugs (AEDs) as prescribed or to control seizures
  • having sudden and frequent changes to AEDs
  • being a young adult (in particular male)
  • having sleep seizures
  • having seizures when alone
  • drinking large amounts of alcohol

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

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

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Epilepsy: Stephen and Denise's story

Stephen and Denise Wottrich both have similar forms of epilepsy, which can cause up to 10 seizures a day. In this video they say that learning to look after each other has made them both stronger.

Media last reviewed: 10/07/2015

Next review due: 10/07/2017

Epilepsy and pregnancy

Find out about your pregnancy care if you have epilepsy, including medication and birth choices

Seizures in labour

How Ellie coped with her epilepsy while she was pregnant

What to do if you see a seizure

Make sure you know what to do if you see someone having a seizure (fit), whether caused by epilepsy or not

Page last reviewed: 25/11/2014

Next review due: 25/11/2016