Epilepsy medicines

Starting medicines

Deciding whether to take epilepsy medicines or not should be a joint decision between you and your specialist. If you need help deciding, the specialist should also involve your family or carer.

There are many different epilepsy medicines available. When the specialist is deciding which one will best suit you, they will consider things like:

• The types of seizure you have, as some medicines are only effective for certain types of seizure
• Your age and sex
• Your lifestyle
• Any other medical conditions you have
• Any other medicines you take

Research has shown that some epilepsy medicines could be harmful to an unborn baby if taken during pregnancy. We have more information on taking epilepsy medicines in pregnancy which you may find helpful.

The Medicines and Healthcare products Regulatory Agency (MHRA) set rules for prescribing sodium valproate medicines. If your specialist is considering prescribing sodium valproate they must follow these rules and also talk through the risks and benefits with you.

Some epilepsy medicines can interact with certain contraceptives. This might affect your choice of contraception.

There may be a choice of medicines that might work well for you. If this is the case, your specialist should give you information about each one, to help you make a decision.

The National Institute for Health and Care Excellence Epilepsy (NICE) guidelines have more information about starting treatment with epilepsy medicines.

How do I take my medicine?

Epilepsy medicine is usually taken once, twice or sometimes 3 times a day. It’s important to take it at the times prescribed by your doctor, because missing a dose can increase the risk of having a seizure.

It’s a good idea to get advice about what to do if you ever forget to take your medicines. You could speak to your epilepsy specialist, GP or epilepsy nurse about this. They can also tell you what to do if you have sickness or diarrhoea. The advice they give you will depend on which epilepsy medicine you are taking, and the dose.

You can sometimes find advice about this on the patient leaflet which comes with your medicine.

The NHS medicines A – Z website has information about missed doses for some epilepsy medicines. Never double up on a dose to make up for missing one. If you have taken a double dose by accident, you should contact NHS 111.

Epilepsy medicine is often available in different forms including chewable, crushable or dispersible tablets, capsules, liquids and granules. If you find tablets difficult, ask your GP to prescribe you something easier to swallow.

Different versions of the same medicine

There are often different versions of the same epilepsy medicines available. These include branded versions and generic versions. For some people, switching between different brands may not be a problem. For others, depending on the medicine you take, there is a chance it could affect seizure control or cause side effects.

Epilepsy Action has more information about switching between different brands of epilepsy medicines.

If you need urgent advice about your medicines, you can contact NHS 111.

Tips for managing your epilepsy medicines:

• Ask your doctor or pharmacist for clear instructions on how to take it
• If you find the medicine leaflet difficult to read because the type is too small, ask for one in large print
• If the packaging is difficult for you to open or handle, ask the pharmacist to change it
• If you have lots of medicines to take, ask your pharmacist about a dosette box. These are boxes that show which pills you need to take and when
• Use an app or alarm on your mobile phone to remind you to take your medicine
• In time, you may be able to ask your GP if they can give you prescriptions for enough medicine to last two or three months
• You may be able to sign-up for your GP’s online service. This allows you to order your repeat prescriptions online. If you like, you can give access to someone else so they can order prescriptions for you
• If you have epilepsy and take epilepsy medicines, you should be able to get free prescriptions anywhere in the UK. Each part of the UK has a different scheme
• If you drink alcohol, Epilepsy Action has information on enjoying this safely

I’ve tried several epilepsy medicines and none work. What can I do?

Around 3 in 10 people with epilepsy have seizures that don’t respond well to epilepsy medicine. They continue to have seizures even though they have tried two or more different medicines. This is sometimes called drug-resistant or refractory epilepsy.

If you’ve tried two or more medicines and you’re still having seizures, your specialist should refer you to a specialist epilepsy centre. This is sometimes called a tertiary centre or tertiary service.

Doctors at a specialist epilepsy centre should review your epilepsy and treatment to try to get you better seizure control. They might also talk to you about other treatments for epilepsy.

Epilepsy Action has more information about getting the right treatment for epilepsy, which includes information about referrals to specialist epilepsy centres.

What if I need to change my epilepsy medicine?

If you need to change from one epilepsy medicine to another, your doctor should give you clear instructions about how to do this. The usual way is to start taking the new medicine 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.

Your doctor will advise you if you need to stop driving while you’re changing medicines. This will usually depend on whether your new medicine is likely to be as effective as the old one. The Driver and Vehicle Licensing Agency (DVLA) rules state that you don’t need to tell the driving agency or return your licence unless you have a seizure.

Will my new medicines affect my original one?

Although your doctor will try to keep the risk as low as possible, if you take more than one epilepsy medicine, they may interact with one another. This means one might raise or lower the amount of another in your blood. This could cause you to have more seizures, or develop side effects. To try to stop this happening, your doctor might have to regularly adjust the dose of one, or both of them. This is to make sure they still work well together.

What if I need to reduce my epilepsy medicine?

If you reduce your epilepsy medicine, your doctor should give you clear instructions about how to do this. During this time, you could be at risk of having seizures. For this reason, your doctor might advise you to stop driving for a period of time. You might also decide to avoid some sporting activities until you and your doctor feel sure that you have good seizure control.

Will I ever be able to stop taking epilepsy medicine?

If you have been seizure-free for at least 2 years, your epilepsy specialist might talk to you about the benefits and risks of stopping your epilepsy medicine. They will only suggest this if they think your risk of having seizures in the future is low. Here are some of the things they will consider before making this decision:

• How long you have been seizure-free – the longer you have been seizure free, the less likely you are to have another seizure
• How many epilepsy medicines you take – if you needed more than one epilepsy medicine to control your seizures, you are at a higher risk of having seizures if you stop taking your medicine
• The number of seizures you had before you got seizure control with epilepsy medicines – the more seizures you had, the higher the risk that your seizures will return
• The type of your epilepsy or syndrome – some types of epilepsy, such as juvenile myoclonic epilepsy, will often 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 become an adult
• The cause of your epilepsy – if your epilepsy is caused by damage or other problems in your brain, there is a higher risk your seizures will return

If you stop taking epilepsy medicine, you should usually do it very gradually. Your epilepsy specialist will advise you how to do it. It could take a few months to stop completely.

If you drive, the driving agencies recommend that, for safety, you should stop driving during the period of medicine withdrawal, and for 6 months after withdrawal is complete. Your doctor will tell you if you can start driving again earlier than this. You don’t need to tell the driving agency or return your licence, unless you have a seizure.

Epilepsy medicines available in the UK

The following information is from the online British National Formulary (BNF). It is jointly published by the British Medical Journal Group and the Pharmaceutical Press.

We list medicines alphabetically under their generic name and we have also included the main brand names.

For more information about how each medicine is used in epilepsy you can go to one of these trusted sources:

• The NHS medicines A-Z website
• BNF epilepsy treatment summary
• The electronic Medicine Compendium (eMC) where you can look for the ‘Patient Information Leaflet’ for the brand and dosage of your particular epilepsy medicine

There are lots of ways to get more information about epilepsy medicines, side effects, and dosages:

• Your GP (family doctor)
• Your epilepsy specialist
• Your epilepsy nurse
• Your pharmacist
• Contact the Epilepsy Action Helpline

We list supply or manufacturing problems we know about on our Drugwatch pages.