Anti-epileptic drugs (AEDs) are the main type of treatment for most people with epilepsy. Up to 70% (7 in 10) of people could stop having seizures with the right medication. AEDs are a type of medication that aims to stop seizures from happening. They do not stop a seizure once it has started and they cannot cure epilepsy.
Some medications are taken as a ‘course of treatment’ to cure a condition (for example, taking a course of antibiotics for an infection). AEDs are different; they are a preventative medication taken every day to try and stop seizures from happening. They do this by reducing the excessive electrical activity in the brain that causes seizures. The way they work is not completely understood, and it is likely that different AEDs work in slightly different ways.
What is the aim of treatment with AEDs?
The aim of treatment is ‘optimal therapy’. This means taking the fewest types of AEDs, at the lowest dose in order to get the best seizure control possible with the fewest side effects. If optimal therapy cannot be found with one particular AED there are usually several others that can be tried, alone or in combination.
When is treatment usually started?
Epilepsy is the tendency to have repeated seizures that start in the brain. Treatment is usually only considered after a diagnosis of epilepsy has been made which usually happens after someone has had repeated seizures. A diagnosis should be made by a specialist, preferably with expertise in epilepsy. This is recommended by NICE (the National Institute for Health and Care Excellence).
In some rare situations treatment might be considered after just a single seizure. This is usually only when a doctor thinks that it is very likely that you will have further seizures. If this is the case they may suggest starting treatment straightaway.
Who will be involved with my epilepsy care?
If you or your child have been diagnosed with epilepsy, it is likely that you will have seen a neurologist, or a paediatrician or paediatric neurologist. You may already have discussed treatment options with them. They will usually prescribe your AEDs and arrange follow-up appointments to see how you are getting on.
Where we refer to a ‘specialist’ this means a neurologist for adults and a paediatrician for children. Once a child reaches around 16 to 18 years of age they will usually change from seeing a paediatrician to a neurologist. This is called ‘transition’.
The day-to-day management of your epilepsy might be under the care of your GP. For example, they might organise your prescriptions. They should also have a copy of your treatment plan so you can talk to them about how you get on.
You might also see an epilepsy specialist nurse (ESN). ESNs work alongside the specialist and GP to help you manage your epilepsy. Not all hospitals have an ESN but you can ask about this at your local hospital.
In the longer term, if your seizures become controlled, you might only see your GP to review your epilepsy each year.
How are AEDs chosen?
There are over 20 AEDs and each has a particular type or types of seizures that it works for. The choice of AED firstly depends on the type of seizures you have, and which AED works for these seizures. NICE has recommendations about which AEDs should be used for different types of epilepsy and seizures.
When a drug is chosen, your specialist will take into account any other conditions you have or medication you take. As you may be on drugs for a number of years, they will consider not just what is right for you right now but also for the future. For example, when a girl is first prescribed AEDs they will think about when she becomes an adult and may want to start a family.
Some AEDs can affect an unborn baby while it is developing and so these drugs are usually avoided for girls and women who may become pregnant.
Although AED recommendations are largely the same for men, women and children, there are some reasons why a particular AED might be chosen or avoided for a particular person. This may be due to possible side effects. For example, some AEDs can affect concentration more than others so they might be avoided for a student at school or college.
You are entitled to free prescriptions for your AEDs and any other prescribed medication. To apply for free prescriptions in England you need to fill in a FP92A form (from your GP surgery or pharmacy). In Scotland, Wales and Northern Ireland all prescriptions are free for everyone.
Treatment is usually started with a first line AED. This is an AED that is tried first and taken on its own, sometimes called monotherapy. Once the most appropriate AED for you has been identified and discussed with you, you will usually start on a very low dose. This helps your body get used to the medication, and makes side effects less likely. The dose is then increased slowly over a number of weeks until it stops your seizures. The right dose for you may be different to what is right for someone else and is sometimes referred to as your ‘individual therapeutic concentration’.
How the body absorbs, uses and removes medication changes with age. For children, AED doses are based on their body weight and so the dose increases as they get older (up to around 12 years of age). For adults, doses are not based on body weight.
For most people, once the right AED for them is found, it will stop their seizures. Although for some people it can take time to get this right, the aim is to stop your seizures by just taking one AED. However, if your seizures do not stop when the dose is increased, or you start to have side effects, you may want to talk to your doctor about changing to a different AED. Because different AEDs work in different ways, if one does not control your seizures it doesn't mean that other AEDs won't work. If you change from one AED to another, the second AED is usually added and slowly increased to a dose which is likely to work, and the original drug is slowly reduced.
If your seizures are not controlled with a single AED you may take a combination of AEDs. This is called polytherapy. Some AEDs added to a first line AED are called second line AEDs. This is slightly different for children because AEDs are not split into first and second line for treating children age 12 and under.
Some people continue to have seizures despite taking AEDs. In this case they may continue to take AEDs to reduce their seizures as much as possible and consider trying other types of treatment.
What if medication doesn’t work for me?
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 AEDs. Rather than waiting until you have tried lots of different AEDs, your specialist might talk to you about alternatives if two or three AEDs have not worked for you.
For example, someone may be considered for epilepsy surgery, VNS (vagus nerve stimulation) therapy, specialist medical dietary treatments (such as the ketogenic diet which is particularly for children) or deep brain stimulation.
Some people consider using complementary therapies alongside AEDs. Most complementary therapies are not used to treat epilepsy but some people find them useful to manage stress, or feel more in control of their life.
If your seizures are not controlled with medication, your specialist may want to review your diagnosis to check that it is correct, to confirm the type of epilepsy or seizures you have, and to review the treatment you have had so far. They may refer you to a tertiary service (a specialist hospital or unit the focuses on specific care for different conditions) if they feel that more specialist treatment would be appropriate for you.
Letter to help you get the same AEDs
We have produced a letter signed by our medical director Professor Ley Sander, supporting your right to be prescribed the same version of your anti-epileptic drugs (AEDs) - unless of course a change is advised for medical reasons. You can download the letter below and give it to your GP, neurologist, pharmacist or healthcare professional. This will help to explain why consistency of medication is important.
Download Letter to your healthcare professional (PDF, 309.44 KB)
How to ensure you are prescribed the same drug
- Ask your doctor to prescribe by brand name so the pharmacist has to give you that version.
- If your doctor writes the generic name of the AED on your prescription, ask them to add the name of the specific drug company.
- Try to go to the same pharmacist each time as they may have a record of your AEDs and may ensure that you receive the same version.
- Check your AEDs while you are still at the pharmacy. If they are different to the ones you usually take, discuss this with your pharmacist. If you have a smartphone you could use our free smartphone app to photograph your AEDs and show them to your pharmacist.
Are you receiving the right information?
Our sodium valproate survey showed us that almost 70% of the women surveyed haven't received new safety warnings about the dangers of taking it during pregnancy. Read the sodium valproate guidelines