Managing your treatment

Care and treatment plans

A care plan is an overview of your epilepsy and its treatment and management. It includes information about your epilepsy and seizures, and other issues that may be important to you, such as education, work, driving, and starting a family. 

You should be offered a care plan, particularly if your epilepsy is recently diagnosed. This might be part of the letter that your specialist will write following an appointment. If you are not offered a care plan you can ask for one.

Part of a care plan includes a treatment (or medication) plan. This sets out how your epilepsy will be treated and usually includes how to start and increase your medication, and what to do if it does not work or you have side effects.  

Your care plan is made by you and your specialist, or epilepsy nurse, together. You should be given a copy of the plan which is usually also given to your GP. It should be reviewed and updated when needed.

How do I know if treatment is working?

Often the best way to measure how well treatment is working is to look at whether your seizures have stopped or if you are having fewer seizures. 

Keeping a seizure diary can help to record how many seizures you are having, when they happen, if anything triggers them, and if your medication is reducing or stopping them. 

Monitoring epilepsy

Epilepsy reviews

You may be offered regular reviews of your epilepsy. If you are still having seizures, a review should be annually with your specialist but, if your seizures become well controlled, you might have annual reviews with your GP. 

Anti-seizure medication (ASM) and osteoporosis

Some ASMs affect bone density in some people. If you have osteoporosis or a family history of osteoporosis, you may be offered a bone density test, and to have your calcium and vitamin D levels checked. 

If medication doesn’t work

Most people’s seizures are controlled with medication. That is why medication is usually the type of treatment that is tried first. But if medication doesn’t stop all your seizures, or only stops some of them, there are other types of treatment that might be considered. This might be instead of, or alongside, ASM. Rather than waiting until you have tried lots of different ASMs, your specialist might talk to you about alternatives if two or three ASMs have not worked for you. 

If your seizures are not controlled with medication, your specialist may want to review your diagnosis, the type of epilepsy or seizures you have, and the treatment you have had so far. They may refer you to a tertiary service (a specialist hospital or unit that focuses on specific care for different conditions) if they feel that more specialist treatment, other than ASM, would be appropriate for you.

Coming off anti-seizure medication

Some people may need to take ASM for a long time. If someone has not had a seizure for two or more years then they may think about withdrawing (coming off) their ASM.

If you are thinking of coming off ASM it is important to get advice from your specialist. Suddenly stopping treatment can cause seizures to start again or happen more often and last longer than before. With your specialist, you can plan how to come off the medication slowly and decide what to do if your seizures start again. If seizures do start again, taking the same ASM straightaway usually gives the same seizure control as before. However, sometimes the ASM may not work as well as before.

Most people do not have symptoms if a drug is withdrawn slowly. However, ASMs that might cause withdrawal symptoms include phenobarbital, diazepam, clonazepam, clobazam, and phenytoin. Thinking about the impact on your life if your seizures start again, such as the effect on driving, work, and leisure, can be an important part of deciding whether to come off your ASM. 

If you are considering coming off ASM, the Driver and Vehicle Licensing Agency (DVLA) has specific guidelines on this. If you drive against your doctor’s advice, you will be driving illegally.

Who can I talk to?

You might want to talk to your specialist, ESN, GP, or pharmacist about your epilepsy and your medication. Or you can call our confidential helpline. 

Epilepsy Society is grateful to Dr F J Rugg-Gunn, Consultant Neurologist & Honorary Associate Professor Clinical Lead, Chalfont Centre for Epilepsy, who reviewed this information.

Information updated: July 2024