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

– 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

– 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 they were stopped with epilepsy medicine – the more seizures you had, the higher the risk that your seizures will return

– 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 usually return if you stop taking medicine

– 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 become 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 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.

My medicine isn't working as well as it did

A small number of people find that their epilepsy medicine stops working as well as it did. If this happens to you, there could be a number of reasons:

You haven’t taken your epilepsy medicine regularly

You have been given a different version of your epilepsy medicine

Your epilepsy has changed

The cause of your epilepsy has changed

Your body has got used to your epilepsy medicine, so it no longer works

You have gained or lost a lot of weight

You have started, or stopped, using or taking something else that has an effect on your epilepsy medicine

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 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.

Will my new medicines affect my original one?

During the changeover you will be taking 2 different epilepsy medicines. 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. 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. And 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.

I've tried several medicines and none works. What can I do?

If your epilepsy medicine is not stopping or reducing your seizures, your GP should arrange for you to see an epilepsy specialist. This is recommended by the National Institute for Health and Care Excellence (NICE). NICE is an independent organisation that provides guidelines for treatment and care for people in the NHS in England, Northern Ireland and Wales. The Scottish Intercollegiate Guidelines Network (SIGN) provides guidelines for Scotland.

When you see the epilepsy specialist, they will review your epilepsy and treatment to try to get you better seizure control. They might also talk to you about other treatments for epilepsy.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.