Living with epilepsy

Being diagnosed with any illness can be a shock. Everybody reacts differently to being told they have epilepsy. For some, it is a relief to have a name for what has been happening to them. Others will feel scared and upset or angry. All of these reactions are normal. Coming to terms with your diagnosis will take time, but with planning, most difficulties can be overcome. If you have any problems or questions, please discuss them with someone, either your GP, one of the National Society for Epilepsy helplines or one of our specialist epilepsy nurses.

Having epilepsy should not take over your life, but it needs consideration. Learning more about your epilepsy can help you and your doctors make the right choices for you.

There are two national associations (the National Society for Epilepsy and Epilepsy Action) who have lots of information on a wide range of topics. Please see our sources of support or the links to the right for further information.

Our epilepsy nurses can help you manage your medication, provide information, give advice and tips on problems encountered in everyday life, or talk over what having epilepsy means for you. Find out more about our speciliast epilepsy nurses.

Lifestyle factors

Approximately 70% of people with epilepsy will have their seizures controlled by the first medication they try. There are also some small changes you can make to your lifestyle which can improve your seizure control:

  • Take your medication as prescribed. 
  • Keep a seizure diary. Include: the date, time and the description of the seizure. It can be useful to note any possible causes such as a late night, missing a tablet, illness or your period if you are a woman. Bring it to your appointments.
  • Be safe. Have a plan for dealing with your seizures. Ensure family, friends and work colleagues know what to do. Take common sense precautions around the house such as showering rather than bathing. Consider carrying an identity card or identity jewellery while out and about.
  • Have a healthy lifestyle. Eat regularly, healthy meals and take regular exercise.
  • Keep stress to a minimum. You cannot avoid it altogether, but have ways of dealing with it, for example, hobbies, exercise, relaxation exercises or use complementary therapies (please seek further advice before using).
  • Try to keep things in perspective. No one's life can ever be risk free; be sensible about what you do.
  • Avoid things which may trigger your seizures, but don't become obsessed by this. Not everyone can identify trigger factors, but common factors are listed below.

Trigger factors

Trigger factors are not the same for everyone. Over time, you may be able to identify some situations when you are more likely to have a seizure. Common factors are:

Lack of sleep

Where possible, try to keep a regular sleep pattern and avoid becoming extremely tired. You may want to avoid night flights if going on holiday, or frequent changes from day to night shifts at work. Parents with very young children may want to plan some extra rest time. If you are trying to 'catch up' on your sleep, it is usually better to have small naps of 20 minutes at a time, rather than long rests during the day to avoid disrupting your night time sleep pattern.

Forgetting your medication

Taking your medication as prescribed is important; it keeps a stable level in the blood and helps you get used to any side effects. A sudden reduction in medication can trigger seizures. It can also mean your doctor may increase the medication dose unnecessarily, assuming it is not working. If remembering to take it is a problem, try to link taking your medication to another action you do everyday, such as cleaning your teeth, or eating a meal. Mobile phones and digital watches often have alarms you can set, and diary boxes available from chemists can be helpful.

Alcohol

Always check with your doctor or nurse but, for most people, if you are receiving treatment and your seizures are stable, one to two units of alcohol in any 24-hour period is unlikely to affect them. You may find that you are affected by alcohol more than usual. If you have a seizure related to alcohol intake, it is most likely to happen the following morning. If you do drink more than you should, make sure someone who knows you have epilepsy, and what to do, stays with you and gets you home safely. Avoid being alone overnight and the next morning.

Exemption from prescription charges

You will be eligible for an exemption certificate, which means you do not have to pay for any medications you are prescribed. Ask your GP to fill out an FP92A form.

Being careful around computers, TV's or strobe lighting

Only 5% of people with epilepsy are photosensitive (seizures triggered by flickering/flashing lights). This is identified during an EEG (electroencephalogram), so check with your doctor if you are concerned. There are laws regulating how quickly lights can flash in a public place, to try to prevent triggering seizures, for example, strobe lights in a disco. The newer style LED or plasma TV and computer screens will not cause a problem. For further information on photosensitivity, please see the National Society for Epilepsy.

Methods of transport for those who are unable to drive

You are eligible for reduced rate train fares and a free bus pass in your area. Please see the information on entitlements for people with epilepsy in England on the Epilepsy Action website for more details.

Discussing epilepsy with your employers/perspective employers

There are very few jobs which people with epilepsy are excluded from doing, and these are for public or personal safety reasons. If you are looking for work, it is perfectly reasonable to wait until your interview to discuss your epilepsy. If you are in work, you will need to tell your manager and occupational health department if you have one. Telling your colleagues is up to you, but giving colleagues some basic information will allow them to deal with a seizure appropriately, reduce their anxiety and allow them to give you some support. 

If you have any concerns, you are covered by the disability discrimination act. Talk to your manager, the disability employment adviser at the job centre or the Citizens Advice Bureau for help. The national society for epilepsy has some further useful advice and information.