This leaflet is a brief introduction to the practical considerations of living with epilepsy.
It is important that you take your medication regularly to reduce the risk of having seizures. This is easier if you can get into a daily routine. Forgetting an occasional dose is not a problem for some people, but for others would lead to breakthrough seizures. Some people with epilepsy have special tablet dispensers to remind them of times to take medication. Pharmacists can advise you further about this and also about your medication.
Dr Sarah Jarvis, 4th June 2021
Updated guidance on medications for epilepsy
The National Institute for Health and Care Excellence (NICE) has updated its guidance on epilepsy in relation to women of childbearing age.
It has reinforced the information below about:
- The possible effect of some epilepsy treatments on the effectiveness of some types of contraception.
- The need to weigh up the risks and benefits of different treatments if you are female and might ever get pregnant.
By law, people with newly diagnosed epilepsy must stop driving. If you have a driving licence, you must declare that you have epilepsy to the Driver and Vehicle Licensing Agency (DVLA). They will advise on when it may be possible to resume driving again. This will usually be after a year free of seizures. If you have an LGV (previously HGV) or PCV (previously PSV) licence, the rules are stricter than for an ordinary licence. The law tries to balance the possible risks to other people with the advantages of driving for an individual.
It is not uncommon for the driving issue to be a factor in deciding whether or not to come off medication. If you have not had a seizure for two or more years, you may be considering whether to try without medication. However, if you stop medication and a seizure recurs, you will have to stop driving again for at least a further year. For some people this can be a very difficult decision. The DVLA recommends that if you do come off medication, you should stop driving during the weaning off stage (which can be for several months) and for a further six months afterwards.
A few jobs exclude people with epilepsy (for example, pilots or people working at heights). However, there are many jobs which are possible. Occasionally, the problem of finding employment is due to discrimination by some employers who have wrong beliefs about epilepsy. The Disability Discrimination Act (DDA) means that people with epilepsy should now be protected from this type of discrimination. More information is available from the Equality and Human Rights Commission.
Most children with epilepsy go to mainstream schools. Many children with epilepsy do not have any other disability, and the seizures are well controlled. Many teachers understand about the correct use of medication and will not be concerned about dealing with a possible seizure. Some children with epilepsy have other disabilities and then may need special schooling.
Some insurance companies do not take an objective view about epilepsy. You may find premiums unfairly raised. Epilepsy Action (see in Further reading below) has an arrangement with an insurance company to provide a range of insurance schemes for people with epilepsy.
People with epilepsy who take anti-epilepsy medication are entitled to free prescriptions. Other benefits depend on individual circumstances. It may be worth discussing your situation with the Citizens Advice Bureau.
Sport and leisure
People with epilepsy can participate in most sports, with informed, qualified supervision and, where appropriate, the relevant safety precautions.
You should make sure you have sufficient medication with you for your travels. Long journeys and jet lag may make you tired and more prone to a seizure. This should not stop you travelling. However, it may be best that someone on the trip be aware of your situation. Some antimalarial tablets interfere with anti-epilepsy medication. Your nurse, pharmacist or travel clinic should be able to advise you about this.
The contraceptive pill
Some medicines used to treat epilepsy interfere with the oral contraceptive pill. Therefore, a higher-dose pill may be needed for effective contraception. Other contraceptives may not be suitable. Your doctor or nurse will be able to advise you.
Being pregnant does not usually make epilepsy any better or worse. However, there is a very small chance that the unborn child may be affected by some medicines used to treat epilepsy. Before becoming pregnant it is best to seek advice from a specialist doctor. These small risks can be discussed.
It is recommended that you take extra folic acid (folate) before becoming pregnant and until you are twelve weeks pregnant. This reduces the chance of certain abnormalities occurring.
If you have an unplanned pregnancy, you should not stop epilepsy medication, which may risk a seizure occurring. However, you should continue your medication and see your doctor as soon as possible.
Some people with epilepsy find that certain triggers make a seizure more likely. These are not the cause of epilepsy but may trigger a seizure on some occasions.
Possible triggers may include:
- Stress or anxiety.
- Heavy drinking.
- Street drugs.
- Some medicines such as antidepressants, and antipsychotic medication.
- Lack of sleep, or tiredness.
- Irregular meals which cause a low blood sugar level.
- Flickering lights such as from strobe lighting.
- Periods (menstruation).
- Illnesses which cause a high temperature (fever) such as flu or other infections.
It may be worth keeping a seizure diary. This may show a pattern which may identify a possible avoidable trigger. Keeping a healthy lifestyle, a well-balanced diet, regular meals and not getting over-tired may help you to feel better and may reduce the chance of seizures occurring.
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Most people with epilepsy have their seizures well controlled by medication. However, it is best to be prepared in case a seizure does occur. Below are some suggestions:
It may be sensible to tell people about your type of epilepsy. It may be possible to give friends, relatives, work colleagues, school teachers, etc, some idea of what will happen if you do have a seizure. They may wish to learn about the recovery position if you have the type of epilepsy that causes unconsciousness.
If you have the type of epilepsy where your behaviour may appear to change (complex focal seizures - used to be called complex partial seizures), other people may be more sympathetic and helpful if they understand and are warned about what to expect.
Consider wearing a medical emergency identification bracelet or similar. These give an emergency phone number where details you wish to give about your condition are held.
The aim is to anticipate and avoid potential serious injury if you have a seizure.
Below are some suggestions, but common sense will prevail in your own personal situation:
- Heat. Do not use open fires. Think about the design of the kitchen. A microwave oven is much safer than a conventional oven, hotplate or kettle. Always turn pan handles towards the back of the cooker. Take the plate to the pan, not a hot pan to the plate.
- Water. Showers are safer than baths. If you do not live alone, tell someone if you are having a bath, turn off taps before you get in, and leave the door unlocked. Keep bath water shallow. Do not bathe a baby alone. When you swim, do it with someone else and not far away from dry ground.
- Heights. Make sure there are sufficient guards or rails in any high situation. Consider a rail at the top of your stairs. It is best not to climb ladders.
- Electricity. Use electrical tools with power breakers. Fit modern circuit breaker fuses.
- Sharp furniture. Safety corners are available to cover sharp edges. Perhaps consider soft furnishings around the home as much as possible.
- Glass. Consider fitting safety glass to any glass in doors or to low windows.
Do not let having epilepsy stop you going out and leading a full and active life. Obviously, not all risks can be eliminated. However, it is best to use common sense and to be safety aware.
Coming to terms with the diagnosis of epilepsy may be difficult. This may be because of wrong or old ideas about epilepsy. Some parents become over-protective towards children with epilepsy. This is understandable but may need to be resisted for the child's best interests.
Like a lot of conditions, it is sometimes the attitude towards the condition that may be more disabling than the condition itself. If you find that you are over-anxious or become depressed because of epilepsy, it may be advisable to have counselling. You should ask your doctor for advice about this.
Further reading and references
Diagnosis and management of epilepsy in adults; Scottish Intercollegiate Guidelines Network - SIGN (2015 - updated 2018)
Epilepsies: diagnosis and management; NICE Clinical Guideline (October 2019 - last updated May 2021)
Epilepsy; NICE CKS, March 2018 (UK access only)
Antiepileptic drugs in pregnancy: updated advice following comprehensive safety review; GOV.UK - Medicines and Healthcare products Regulatory Agency (January 2021)