Treatment for people with epilepsy aged 13 and over
Epilepsy is a very individual condition and people can have very different experiences. The majority of people with epilepsy take anti-epileptic medication to stop or reduce the number of seizures they have.
Up to 70% of people with epilepsy could have their seizures controlled (stop having seizures) once the best medication is found for them. Anti-epileptic drugs (AEDs) are used to prevent seizures from happening. AEDs are not used to stop seizures while they are happening and do not cure epilepsy.
Some people may not get complete control of their epilepsy, even though they may have had the most suitable treatment for their type of seizure(s). If this happens the drug treatment should be kept as simple as possible. This minimises side effects and encourages people to take their medication as prescribed (recommended for them).
Before starting on AEDs, it is important that your neurologist finds out as much as possible about your epilepsy. This is because the AED that is prescribed depends on the type of seizures you have. Usually your neurologist will choose which drug is likely to work best for you based on the seizures you have. This will also take into account your lifestyle and any other medical conditions you may have.
The National Institute for Health and Clinical Excellence (NICE) recommends that people with newly diagnosed epilepsy are treated with one type of drug at a time – this is called monotherapy. If your medication needs to be changed, it should be done so gradually. If you are still having seizures after trying two different AEDs, your neurologist may look at your diagnosis again.
AEDs are divided into two categories – first line and second line drugs. First line drugs are prescribed on their own when treatment is started. If a first line drug does not stop seizures from happening, a different first line drug might be tried instead. Alternatively a second line drug may be prescribed alongside the first line drug.
For some people, taking two kinds of AED is more effective than one. Taking more than one type of AED is called polytherapy.
Usually AEDs are started at a low dose that will be slowly increased, if needed. Generally the most suitable dose for a person is found by carefully monitoring their seizures. The drug table shows the average daily doses of different AEDs, although the dose you take may be higher or lower than the average adult daily dose.
No one should suddenly stop taking their AEDs or take extra AEDs without talking to their doctor. Suddenly stopping AEDs can cause seizures to come back, or to happen more often. The seizures could also last for longer than they did before.
Most AEDs have at least two names, a generic name (for example carbamazepine) and a brand (or trade) name given by the manufacturer (for example Tegretol). Different brands of a drug can vary slightly, and this could affect a person’s seizure control. For this reason it is recommended that people with epilepsy continue to take the same version of medication all the time, whether it is a generic or brand version.
Sometimes medication is labelled in a different language. This happens if the drug has been made in another country and brought into the UK. This is sometimes called a parallel import. Some people find that taking parallel import drugs can affect their seizure control. If you are not sure if the AEDs you have been given are the same as those you normally take, you can check with your pharmacist or doctor. If you do not want to take medication that has been imported from outside the UK you have the right to refuse it, and to ask for a supply from within the UK. Again, by always taking the same version of a drug there may be less risk of having a seizure.
It is a good idea to get your prescription from the same pharmacist each time if possible. Many pharmacists keep patient medication records and can help with queries about prescriptions and some can help review your medications (called a medicines use review).
AEDs work best when they are taken regularly. The exact timing of doses is not usually crucial but it is recommended that the right dose is taken around the same time or times each day, and that that they are evenly spaced apart. For most people, missing one dose on a rare occasion is unlikely to result in a seizure.
Drug wallets may help you to take the right doses at the right times. Drug wallets usually hold seven small containers to keep medication in (one for each day of the week). Each container is divided into sections for the morning, afternoon and evening. Each container can be removed if you are going out and want to take your medication with you.
All medications can cause side effects, but whether or not someone has them depends on their individual reaction to the medication. Side effects can vary from person to person, and from drug to drug.
Some people have an allergic reaction to their medication. This is rare but can be serious. A skin rash is often the first sign of an allergic reaction and usually happens soon after starting treatment (regardless of the size of the dose). If you think you have an allergic reaction, this should be reported to your doctor as soon as possible.
Dose-related effects can happen if the dose is too high. Starting medication at a low dose and increasing it slowly may avoid many side effects. Some side effects occur when starting new AEDs, and these normally wear off after a few days. If you have any ongoing side effects it is worth telling your doctor about them.
If drugs are taken for a long time (many years), long-term side effects may happen. This does not always happen and keeping the drug treatment as simple as possible may lower any risk of these effects.
Some AEDs may affect how other medications work and some other medications can affect how AEDs work. It is important to tell your doctor about any other medication you are taking. This helps to avoid any possible interactions (when different drugs affect each other). It can also be helpful to check with a pharmacist before taking over-the-counter medications, including complementary therapies.
Information on complementary treatments
The decision to drink alcohol when taking AEDs is a personal choice. How alcohol affects AEDs depends on the individual, which AED they take and how much alcohol they have had. Some people find that if they drink too much alcohol, it can also trigger seizures in the hangover period. The patient information leaflet that should come with your AEDs often has guidance on drinking alcohol with the AED, or you can talk to your doctors about this.
Any kind of drug treatment should be closely monitored. With AEDs, monitoring involves checking how often a person has seizures and if they are having side effects from the drugs. AED doses are altered as appropriate for each person, in order to get the best control of seizures.
Before starting AEDs you may be asked to have a blood test. The blood test looks at a number of things, for example how well your liver is working. If you have osteoporosis (where bones become fragile and are more likely to break), or a family history of osteoporosis, you may be asked to have a test to look at your bone density. These tests may be repeated every one to two years, or more frequently if there is concern that a side effect is happening.
When someone is already taking AEDs there are times when having a blood test may be useful:
as a guide to finding the correct dose of phenytoin. For other AEDs, measuring drug levels is generally of little help in deciding the best dose. It is more useful to see if the person is having any seizures or any side effects from the drugs.
Some other groups that may benefit from monitoring include older people, people with poor liver or kidney function and people with learning disabilities who find speech difficult.
For some AEDs an alternative to blood level testing is testing saliva levels. This can be particularly helpful for people with learning disabilities because it may be easier and less painful than a blood test.
Some people may need to take AEDs for a long time, sometimes many years. However, if someone has not had a seizure for two or more years they may be able to withdraw (come off) their AEDs.
If you are thinking about coming off your AEDs, this should be done with advice from your GP or neurologist. This is because stopping treatment can lead to seizures starting again, and sometimes seizures might last longer than they did before.
When thinking about coming off AEDs, it is also important to consider the impact on your life if your seizures start again (for example the effect on work, leisure interests and driving). For some people, if seizures do start again, taking the same medication again straight away usually gives the same seizure control as before. But in some rare instances the original AED may not work as well as before.
Most people do not have withdrawal symptoms if a drug is withdrawn slowly. However, AEDs that might cause withdrawal symptoms include phenobarbitone, diazepam, clonazepam, clobazam and phenytoin. These symptoms may include feelings of anxiety, panic, restlessness or sweating.
Some types of contraception might be less effective for women taking some AEDs. This depends on the individual, which AEDs they take and the type of contraception they use. Our epilepsy and women page has more information about contraception and AEDs.
There is a chance that taking AEDs while pregnant may affect the developing baby. However these risks need to be carefully considered for each individual and balanced against the possibility of seizures happening during pregnancy. More information about epilepsy, pregnancy and parenting.
When a seizure continues for more than 30 minutes or when one seizure follows another without recovery in between, it is known as status epilepticus (or ‘status’). When status epilepticus happens during a tonic clonic (convulsive) seizure it is a medical emergency and needs urgent treatment. Seizures that last longer than usual, or an increased number of seizures, often happen before status. In some cases, missing doses of AEDs can trigger status.
The drug diazepam is often used to help stop status epilepticus from happening. It is usually given rectally and is only used in an emergency. Diazepam can cause sedation and breathing difficulties so the person must be closely watched until they have fully recovered.
For people who go into status, their doctor may prescribe diazepam so that a carer can give it to them. Carers will need to be trained in giving rectal diazepam; this can be from a health care professional or the NSE. It is important that every individual who is prescribed diazepam has a written protocol for their carers to follow.
Midazolam, a liquid medicine given into the side of the mouth, is sometimes used as an alternative to diazepam. However, midazolam is not licensed for this use and is not widely available. Like diazepam, specialist training and a protocol are needed to be able to give midazolam.
More information about status epilepticus on our page about seizures.
Information about NSE training services.
Epilepsy is a very individual condition and people respond differently to their treatment. The National Institute for Health and Clinical Excellence (NICE) recommends that adults with epilepsy should have a review of their epilepsy at least once a year, with either their GP or neurologist.
Glossary
Anti-epileptic drug (AED) - medication taken for epilepsy.
Generic and brand names - the generic name is the name of the type of drug or it’s chemical or “active” ingredient, and the brand name of a drug is the name given by it’s manufacturer (e.g. Nurofen is a brand name of the generic drug ibuprofen).
People with epilepsy are entitled to free prescriptions for their anti-epileptic drugs and also for any other prescribed medication. To apply for free prescriptions fill in a FP92A form (or EC92A in Scotland, FP92W in Wales or HC11B in Northern Ireland). These are available from GP surgeries or pharmacies.
To donate blood, people with epilepsy must be seizure-free and off AEDs for two years.
