This information is relevant to people who live in the UK.
- Introduction to epilepsy medicines
- List of epilepsy medicines available in the UK
- Starting treatment
- Taking your epilepsy medicine
- Doses of epilepsy medicines
- How long it takes for epilepsy medicines to work
- The Yellow Card Scheme
- Changes in how well epilepsy medicines work
- Changing epilepsy medicines
- Interactions between epilepsy medicines
- Drug level monitoring
- Stopping treatment
- Possible effects of epilepsy medicine on other things
- Possible effects of other things on epilepsy medicine
The most common way epilepsy is treated is with epilepsy medicines. They do not cure epilepsy, but aim to try and stop seizures happening. Generally, they do this by changing the levels of chemicals in your brain that control the electrical impulses.
A single seizure is not usually classed as epilepsy. This is why doctors often don’t prescribe epilepsy medicine until you have had two or more seizures. Occasionally, doctors might recommend that you start treatment after just one seizure, if they think you are at risk of having more.
There are many different epilepsy medicines available. Your epilepsy specialist will recommend the most appropriate one for you. They will take various things into consideration, including:
- The type of seizures you have
- Your age and sex
- If you have any other medical conditions
- If you take any other medicines
- Your preferences
Doctors usually try to prescribe just one epilepsy medicine at a time. This is because the more you take, the higher is the risk of having side-effects. However, there may be times when you need to take two or more. One example is if you change from one epilepsy medicine to another. Another example is if the doctor thinks that taking an extra one would give you better seizure control.
If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions.
Most epilepsy medicine is available as tablets, capsules, liquids and chewable or crushable tablets. If you find tablets difficult, you can ask your GP (family doctor) to prescribe you something that you would find easier to swallow.
Epilepsy medicine is usually taken once or twice a day. Sometimes it is taken three times a day. It is important to take it regularly, as prescribed by your doctor. This is to keep as steady a level of the medicine in your blood as possible. If you miss a dose, this can increase the risk of having a seizure.
It is a good idea to get advice about what you should do if you ever forget to take your epilepsy medicine. You could speak to your epilepsy specialist, GP (family doctor) or epilepsy nurse about this. The advice they give you will depend on which epilepsy medicine you are taking and the dose. They will also consider any other medical conditions you have, or other medicines you are taking, that might affect your epilepsy.
Making treatment with epilepsy medicine easier
- Ask the pharmacist for clear instructions on how to take it
- If you find the patient information leaflet difficult to read, ask for one in large print
- If the packaging is difficult for you to open or handle, ask the pharmacist to change it
- Ask the pharmacist if they sell Dosette boxes or something similar. These keep your medicine organised and help you to make sure that you take the right ones at the right time
- Contact the Disabled Living Foundation for information about other special pill containers or alarms that you can buy. These can be used to remind you to take your medicine
Tel: 0845 130 9177
Your doctor will tell you how much of your epilepsy medicine you should take. It is usual to start taking a low dose and gradually increase it to the maintenance dose. This is the amount of medicine which is thought to work well at controlling seizures.
Each epilepsy medicine has a different maintenance dose. For example, for carbamazepine it is between 800 and 1,200 milligrams (mg). For zonisamide it is between 300 and 500 mg.
It can take a few weeks or months to reach the maintenance dose. Starting at a lower dose, then gradually increasing it, allows your body to slowly get used to the medicine. This reduces the risk of side-effects.
Sometimes, your doctor might advise you to take a higher or lower dose than the recommended maintenance dose. This could be to get better control of your seizures, or to reduce the risk of side-effects.
Many people with newly-diagnosed epilepsy respond well to epilepsy medicine and they have fewer seizures, or the seizures stop altogether. It is not possible to say how long this will take. For many people, it happens quickly, but for others it can take a lot longer.
About 30 in every 100 people with epilepsy have seizures that do not respond well to epilepsy medicine. They continue to have a number of seizures, even though they have tried two or more different ones.
All medicines can cause side-effects. These are effects that a medicine has on your body, in addition to the job they are supposed to do. Side-effects are usually unwanted and common ones include headaches, feeling sick, dizziness, drowsiness and mood changes.
The risk that you will have side-effects from your epilepsy medicine depends on a number of things, including which one(s) you take and any other medicines you take.
When you collect your prescription, there should, by law, be a patient-information leaflet (PIL) which lists the possible side-effects. You could get any of those listed, but most people get few or mild side-effects. Some people do not get any side-effects at all.
There is more risk that you will get side-effects in the early days of taking an epilepsy medicine. Once your body has had a few days or weeks to get used to taking it, they should lessen or disappear completely. If they don’t, talk to your family doctor or epilepsy specialist. They might make changes to your epilepsy medicine to lessen the side-effects.
You can find information about side-effects of individual epilepsy medicines on the Medicine Guides website.
If you live in the UK and think that you are getting side-effects from your epilepsy medicine, talk to your GP (family doctor). They can report them to the Medicines and Healthcare products Regulatory Agency (MHRA).
You can also report side-effects yourself by completing a Yellow Card. These are available from your GP (family doctor), pharmacist or the Yellow Card scheme:
Tel: 0808 100 3352
Since July 2015 you can also download a free Yellow Card scheme app to use for reporting problems with medicines and for tracking information about different medicines.
You can download the app from the iTunes App Store and Google Play for your IOS or Android device.
A small number of people find that their epilepsy medicine stops working as well as it once did. If this happens to you, there could be a number of reasons. These include:
- Not taking your epilepsy medicine regularly
- Your epilepsy itself may have changed
- The cause of your epilepsy may have changed
- Your body may have got used to the epilepsy medicine, so the medicine no longer works
- Gaining or losing weight
The National Institute for Health and Care Excellence (NICE) is an independent organisation. They provide guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. NICE recommends that if your epilepsy medicine is not stopping or reducing your seizures, your GP (family doctor) should arrange for you to see an epilepsy specialist. The specialist might suggest changes to your treatment, to try and get better seizure control.
It is very important that you do not make any changes to your epilepsy medicine yourself. This could cause you to have more seizures
You can find out more about the National Institute for Health and Care Excellence on their website: nice.org.uk
If you have been taking an epilepsy medicine for a while, and are still having seizures or side-effects, talk to your GP (family doctor) or epilepsy specialist. They might suggest that you try taking a different one.
The usual way to change epilepsy medicine is to start taking the new one at a low dose, alongside your existing one. The dose is gradually increased until you reach the maintenance dose. Then, the old epilepsy medicine is gradually reduced. This can take weeks or months to do.
If you change your epilepsy medicine, you are at risk of having more seizures than usual. You could have withdrawal seizures from stopping the old medicine, or the new medicine might not work well for you. Because of this, your doctor might advise you to stop driving for a period of time. You may also decide to avoid activities such as some sports, until you and your doctor feel sure that you have got good seizure control.
If you take more than one epilepsy medicine, one of them may raise or lower the amount of another in your blood. This could cause you to have more seizures.
So, if you take more than one epilepsy medicine, and your doctor changes the dose of one, they might also change the dose of other ones you are taking. This is to make sure that they still work well together.
Drug level monitoring involves having regular blood tests to check how much of a medicine (or drug) is in a person’s blood.
Doctors do not usually do drug level monitoring for people taking epilepsy medicine, unless there is a specific reason to do so. Here are some of those reasons.
- To make sure that a person is taking the right dose of the epilepsy medicine phenytoin
- To see if a person is taking their epilepsy medicine regularly
- To find out if the reason a person is getting side-effects is because the dose of their epilepsy medicine is too high
- To find out if levels of certain epilepsy medicines have changed during pregnancy
If you have been seizure-free for at least two years, your epilepsy specialist might discuss with you the risks and benefits of continuing or stopping your epilepsy medicine. They will suggest this if they think that the risk of your seizures coming back is low. Here are some of the things they will consider to make this decision:
- How long you have been seizure-free - the longer you have been seizure-free, the lower is the risk that you will have another seizure
- How many epilepsy medicines you take – if you needed more than one epilepsy medicine to control your seizures, there is a higher risk that your seizures will return if you stop taking medicine
- How many seizures you had before they were stopped with epilepsy medicine - the more you had, the higher is the risk that your seizures will return
- The type and cause of your epilepsy - some types of epilepsy, such as juvenile myoclonic epilepsy, will usually return if you stop taking medicine
- How old you were when your seizures started - some types of epilepsy that begin in childhood go away when you are an adult
If you do stop taking epilepsy medicine, you will usually do it very gradually. Your epilepsy specialist will advise you how to do this. It could take a few months to stop taking it altogether. If you stop taking epilepsy medicine too quickly, it could cause you to have more frequent and severe seizures.
When stopping your medicine you must stop driving. This is for safety reasons. You will have to stop driving whilst coming off your medicines and for six months afterwards. If you live in England, Scotland or Wales you don't need to inform DVLA. If you live in Northern Ireland you must inform DVA.
Some epilepsy medicines may cause your bones to become thinner and more brittle, which means you are more at risk of breaking them. These are:
- Sodium valproate
Information about sodium valproate
The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you the MHRA advise you to read this booklet along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant your doctor should only prescribe sodium valproate if nothing else works for you.
If you are concerned that you may be at risk of having weaker bones, talk to your GP (family doctor). They can suggest ways you can look after your bones, such as taking vitamin supplements and exercising, if this is suitable for you.
If you are a woman with epilepsy, it is advisable to plan any pregnancy if you can. This is to make sure that the pregnancy is as healthy as possible for both you and your baby. So, it is important to use a type of contraception that works well for you.
Some epilepsy medicines make some types of contraception work less well than they should. This could lead to an unplanned pregnancy.
Some types of contraception make some epilepsy medicines work less effectively. This could lead to an increase in your seizures.
Epilepsy medicines which may interact with some types of contraception include:
- Eslicarbazepine acetate
If you take epilepsy medicine and you are planning to use contraception, speak to your GP (family doctor), or your local sexual health clinic (details in your local Phone Book).
Some medicines used to treat conditions other than epilepsy can increase your risk of having seizures. They might lower your resistance to seizures, or interact with your epilepsy medicine, making it work less well.
Some of these include some antidepressants, some types of antihistamines, some antibiotics and some anti-malaria treatments.
If you are going to take a prescribed medicine, always check with your GP (family doctor) or pharmacist if they could affect your epilepsy or epilepsy medicine.
Some research suggests that eating grapefruit or drinking grapefruit juice could increase your chances of having unwanted side-effects from some epilepsy medicines. This is because a chemical that is naturally found in grapefruit can cause you to have higher levels of these medicines in your body. If you have any concerns about this, talk to your GP or pharmacist.
The medicines that can be affected by grapefruit are:
Epilepsy Action would like to thank thank Dr John Paul Leach, consultant neurologist, Southern General Hospital, Glasgow for his contribution.
Dr John Paul Leach has declared no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated May 2014To be reviewed May 2017