YOUR HEALTH CARE DECISIONS
ARE THEY FOR LIFE?: ANTI-EPILEPTIC DRUGS
This is one of a series of leaflets based on recent research evidence and guidelines. It aims to help you with decisions about your health care.
This leaflet is for adults with epilepsy who are taking anti-epileptic drugs and have not had a seizure for two or more years.
This document is also available in pdf format (108k)
Contents
Who is this leaflet for?
What is epilepsy?
How can anti-epileptic drugs help?
Anti-epileptic drugs - are they for life?
How likely am I to have another seizure if I come off my anti-epileptic drugs?
What do I need to think about before making a decision?
What should I do if I want to come off my anti-epileptic drugs?
What happens if I have another seizure?
Where can I get more information?
Important
If you want to come off your anti-epileptic drugs, you should discuss this with a doctor or nurse who specialises in epilepsy care. They can draw up a plan for you to come off your drugs slowly. If you stop taking your anti-epileptic drugs too quickly, you increase the risk of having another seizure. |
Who is this leaflet for?
This leaflet is for adults with epilepsy who are taking anti-epileptic drugs and have not had a seizure for two or more years. It describes what current research says about staying on, or coming off, anti-epileptic drugs. People with epilepsy have different opinions about their anti-epileptic drugs. This leaflet gives you information to help you make the choices that are right for you.
If you have juvenile myoclonic epilepsy, most of the information in this leaflet will not apply to you. People with juvenile myoclonic epilepsy should usually keep taking their anti-epileptic drugs because they are very likely to have more seizures if they stop.
Women who are, or who might become, pregnant, and are considering coming off their anti-epileptic drugs, will need to consider other issues that we do not cover in this leaflet. (You can discuss what is best for you and your baby with a doctor or nurse who specialises in epilepsy care.)
What is epilepsy?
Epilepsy is a condition where people have epileptic seizures (also known as fits, attacks, turns or convulsions). A seizure happens when there is a sudden disturbance in the way the nerve cells in the brain work. Seizures are usually short, lasting from a few seconds to a few minutes. There are many different types of epileptic seizures and a person may have more than one kind. We describe the main types of seizures in box 1 below.
Box 1 Types of seizures
There are two main groups of epileptic seizures - generalised and partial seizures.
Generalised seizures: These involve the whole brain and the person loses consciousness. There are several types and some of the most common are described below: Tonic-clonic (used to be called 'grand mal') seizures:
First the muscles stiffen and the person, if standing, may fall. This is the tonic phase. The muscles then relax and tighten, causing the person's body to twitch. This is the clonic phase. Myoclonic seizures: These usually happen in the morning shortly after a person has woken up. The muscles of the arms or legs begin to twitch. Absence (used to be called 'petit mal') seizures: The person briefly loses consciousness, is not aware of what is happening and may appear to be daydreaming.
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Partial seizures: These start off in one part of the brain but can spread to involve the whole brain. They can be either 'simple' or 'complex'. Simple partial seizures: These do not affect consciousness. Parts of the body may begin to twitch, a person's sense of hearing or sight may change and a person may feel sick or afraid. These feelings are called 'auras' if they develop into another type of seizure. Complex partial seizures (sometimes called temporal lobe epilepsy): These do affect awareness. The person cannot remember what happened and may have a number of strange feelings. For example, a person may feel that time is passing very quickly or very slowly. A person may also be seen to smack their lips, fiddle with their clothes, wander about or speak strangely.
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How can anti-epileptic drugs help?
Most people who have epilepsy are given anti-epileptic drugs to help prevent seizures. Most people who take anti-epileptic drugs can live a life free of seizures.
Anti-epileptic drugs - are they for life?
Anti-epileptic drugs are not always for life. People involved in epilepsy care have developed guidelines on caring for people with epilepsy.
These guidelines say that people who have been free of seizures for two or more years should be given the chance to come off their anti-epileptic drugs if they want to. When we talk about 'free of seizures', we mean free of all kinds of seizures. These include brief losses of, or changes in, awareness, or limb jerks, which may seem very minor.
These guidelines are based on research that involved two groups of people who were taking anti-epileptic drugs and had not had any kind of seizure for two or more years. One group of people kept taking their anti-epileptic drugs. The other group came off their drugs slowly over a period of at least six months.
Over half the people who came off their anti-epileptic drugs slowly did not have another seizure in the next five years. Two out of three who continued to take their anti-epileptic drugs did not have another seizure in the next five years.
The research shows that some people are more likely than others to have a seizure if they stop taking their anti-epileptic drugs.
How likely am I to have another seizure if I come off my anti-epileptic drugs?
The research shows that you are more likely to have a seizure after coming off your anti-epileptic drugs if:
you have had myoclonic or tonic-clonic seizures in the past;
you are taking more than one anti-epileptic drug;
you have had one or more seizures after starting to take your anti-epileptic drugs; or
you have recently had a seizure.
The research shows that the longer it has been since you last had a seizure, the less likely it is that you will have another.
The following tables give some examples of how likely people are to have another seizure if they slowly come off their anti-epileptic drugs or if they continue to take them. These tables can give you some idea of how likely you might be to have another seizure. However, nobody can say for sure what will happen in your particular case. You might want to talk about how the tables apply to you with your doctor or nurse.
You might find it helpful to answer the following questions before you look at these tables.
What types of seizures have you had in the past?
How many anti-epileptic drugs are you taking now?
How many years is it since you had a seizure?
What do I need to think about before making a decision?
People with epilepsy have different opinions about coming off anti-epileptic drugs. Some people do not want to come off the drugs because they do not want to increase their risk of having a seizure. Others are keen to come off drugs because they are worried that the drugs may have long-term side effects.
You might like to consider some of the following issues before you make a decision.
Risks of seizures
During a seizure people can hurt themselves or others. The amount of harm and the chances of it happening will depend on the type of seizure and where it happens. You need to think about this and what you can do to reduce any risks before making a decision.
Driving
If you drive and you decide to come off your anti-epileptic drugs, your doctor or nurse and the Driver and Vehicle Licensing Agency (DVLA) will advise you to stop driving while you are coming off your drugs and for six months after you have stopped taking them.
If you have any kind of seizure while you are coming off your drugs or any time after you have stopped taking them, you should let the DVLA know straight away. You will lose your driving licence and not be allowed to drive again until you have been free of seizures for at least a year.
Work
Is coming off anti-epileptic drugs going to affect your ability to do your job? If you have a seizure at work, will you be putting yourself or others at risk? Are there any employment regulations that you need to think about? Do you need to tell anyone at work if you decide to come off your anti-epileptic drugs?
Home
What is your home situation? If you have responsibility for young children or someone else at home, what support can you get?
Sports and leisure
Coming off your anti-epileptic drugs doesn't mean you have to give up your leisure activities. But you may want to consider what steps you can take to make your leisure activities safer. For example, if you are going swimming, you should tell the lifeguard that you have epilepsy. It would also be sensible to go with a friend who knows about your epilepsy and what to do if you have a seizure.
Side effects of anti-epileptic drugs
Are you worried about any short- or long-term side effects your anti-epileptic drugs might have? If so, you should discuss these with a doctor or nurse who specialises in epilepsy care.
What should I do if I want to come off my anti-epileptic drugs?
If you are thinking about coming off your anti-epileptic drugs, you should speak to a doctor or nurse who specialises in epilepsy care. They will draw up a plan to help you slowly cut down the amount of anti-epileptic drugs you take over a period of time. If you stop taking your anti-epileptic drugs too quickly, you could have another seizure.
You may also want to speak to your family, friends and people at work about what support they can give you while you are coming off the drugs.
Too much alcohol, stress, lack of sleep or flickering lights can trigger seizures in some people. You might want to avoid these situations if they affect you.
What happens if I have another seizure?
If you have a seizure while you are stopping, or after you have stopped, taking the drugs, you might want to start taking your drugs again. If you decide to start taking your drugs again, your doctor or nurse can help you plan to do this in a safe way.
Where can I get more information?
As well as speaking to a doctor or nurse who specialises in epilepsy care, you could speak to your pharmacist or contact one of the epilepsy associations listed. These organisations can also tell you about epilepsy groups in your area.
Epilepsy organisations |
Epilepsy Action Scotlandhttp://www.epilepsyscotland.org.uk
Helpline phone: 0141 427 5225 (Monday to Friday 9am to 4.30pm) British Epilepsy Associationhttp://www.epilepsy.org.uk
Helpline phone: 0808 800 5050 (Monday to Thursday 9am to 4.30pm and Friday 9am to 4pm) National Society for Epilepsyhttp://www.epilepsynse.org.uk
Helpline phone: 01494 601400 (Monday to Friday 10am to 4pm) Enlighten (Edinburgh, East and Midlothian region)
Phone: 0131 226 5458 West Lothian Epilepsy Resource Centre (West Lothian)
Phone: 01506 464446 |
You can also get information about your health care from the NHS Helpline.
Helpline phone: 0800 22 44 88 (7 days a week, 8am to 10pm)
You can find the guidelines on which this leaflet is based on the Internet or by contacting the organisation below.
Diagnosis and Management of Epilepsy in Adults. A National Clinical Guideline (1997)
Scottish Intercollegiate Guidelines Network (SIGN) Website: http://www.sign.ac.uk
SIGN Secretariat
The Royal College of Physicians of Edinburgh
9 Queen Street
Edinburgh
EH2 1JQ
We have also used research evidence from the following paper.
MRC Anti-epileptic Drug Withdrawal Study Group (1999).
Does withdrawal of different anti-epileptic drugs have different effects on seizure recurrence?
Further results from the MRC Anti-epileptic Drug Withdrawal Study, Brain, 122, 441-448.
This leaflet has been written by researchers at the Health Services Research Unit at the University of Aberdeen. They have used the best research evidence available to make sure that the leaflet is as accurate as possible. They have checked the content with: doctors and nurses who specialise in epilepsy care; consumer representatives; and people who have epilepsy.
The authors of this leaflet have made every effort to be as accurate and up to date as possible. They checked the information in March 2001. However, medical knowledge is always changing. Many factors affect how well medical knowledge applies to particular individuals. You should also get advice from qualified health-care providers. Those involved in producing this leaflet will not be responsible for any mistakes or missing information in the leaflet. And, they will not be responsible for any action that you may take as a result of using this leaflet. April 2002 |
You can get more copies of this leaflet by phoning the NHS Helpline on 0800 22 44 88 (7 days a week, 8am to 10pm)
or from Scottish Health on the Web (SHOW) athttp://www.show.scot.nhs.uk If you need this information in another language, please contact the Health Planning and Quality Division of the Scottish Executive Health Department at St Andrew's House, Regent Road, Edinburgh EH1 3DG, or phone 0131 244 2839. |