Most people with epilepsy can be successfully treated with AEDs. AEDs do not cure epilepsy, but can prevent seizures from occurring.
There are many different AEDs. Generally, they work by changing the levels of the chemicals in your brain that conduct electrical impulses. This reduces the chance of a seizure.
The type of AED recommended for you will depend on a number of factors, including the type of seizures you have, your age, whether there are any concerns about a certain AED interacting with other medicines (such as the contraceptive pill), and whether you are thinking of having a baby.
Examples of commonly used AEDs include sodium valproate, carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, ethosuximide and topiramate.
AEDs are available in a number of different forms, including tablets, capsules, liquids and syrups.
It is important you follow any advice about when to take AEDs and how much to take. Never suddenly stop taking an AED because doing so could cause a seizure.
Your specialist will start you on a low dose of an AED, then gradually increase it within safe limits until your seizures stop, or if you develop side-effects. If one AED does not control seizures, another will be tried by gradually introducing the new medication and slowly reducing the dose of the old one.
The aim is to achieve maximum seizure control with minimum side effects, using the lowest possible dose of a single medicine. Trying a different type of AED is preferable to taking more than one AED, although a combination of medicines may sometimes be necessary to control seizures.
While taking AEDs, do not take any other medicines, including over-the-counter medicines or complementary medicines such as St John's Wort, without first speaking to your GP or epilepsy specialist. Other medicines could have a dangerous interaction with your AED and cause a seizure.
Sodium valproate is not usually prescribed for women of childbearing age because there is a risk it could cause physical defects or developmental problems in an unborn baby.
It can be used if there is no alternative, or if your specialist has assessed you and it's unlikely you'll respond to or tolerate other treatments. Your specialist or GP will also need to check you are using a reliable form of contraception. Learn more about the risks of valproate medicines during pregnancy.
If you do not have a seizure for more than two years, it may be possible to stop taking your AEDs. Your epilepsy specialist can discuss with you whether this is appropriate and the best way this can be done.
Side effects are common when starting treatment with AEDs. However, they are usually short-lived and pass in a few days.
The specific side effects you may experience will depend on the medication you are taking, but general common side effects of AEDs include:
- a lack of energy
- uncontrollable shaking (tremor)
- hair loss or unwanted hair growth
- swollen gums
If you develop a rash, this may mean that you are allergic to the medication. In this case seek medical advice right away.
Sometimes, you may experience symptoms similar to being drunk – such as unsteadiness, poor concentration and vomiting – if your dose is too high. Contact your GP or epilepsy specialist immediately if you experience these side effects so that your dose can be revised.
For information on the side effects of a particular AED, check the information leaflet that comes with your medication.
If your epilepsy is still poorly controlled after trying treatment with AEDs, you may be referred to a specialist epilepsy centre to see if you are suitable for surgery to remove the part of your brain causing your seizures.
This involves having various types of brain scans to find out where the epilepsy is focused. Memory and psychological tests are also conducted to assess how you are likely to cope with the stress of surgery and how it might affect you.
Surgery is only recommended when:
- a single area of the brain is causing seizures (partial or focal seizures)
- removing that part of the brain would not cause any significant loss of brain function
As with all types of surgery, this procedure carries a number of risks. This includes a risk of serious problems such as memory problems and strokes after the operation. However, around 70% of people who have epilepsy surgery become completely free of seizures.
Before having the procedure, your surgeon will explain to you the benefits and risks of the surgery.
Most people normally recover from the effects of surgery after a few days, but it could be several months before you are fully fit and able to return to work.
If your epilepsy is still poorly controlled after trying treatment with AEDs, and brain surgery is not suitable for you, your doctor may recommend an alternative procedure.
The most commonly used alternative to surgery is vagus nerve stimulation (VNS), although in a few cases deep brain stimulation (DBS) may be recommended.
Vagus nerve stimulation (VNS)
VNS involves surgically implanting a small electrical device, similar to a pacemaker, under your skin, near your collarbone.
The device has a wire that is wrapped around one of the nerves in the left side of your neck, known as the vagus nerve. The device passes a regular dose of electricity to the nerve to stimulate it. This can help reduce the frequency and severity of seizures.
If you feel the warning sign of a seizure coming on, you can activate an extra "burst" of stimulation, which may prevent the seizure from occurring.
How and why VNS works is not fully understood, but it is thought that stimulating the vagus nerve alters the chemical transmissions in the brain.
Most people who undergo VNS still need to take AEDs.
Some mild to moderate side effects of VNS therapy have been reported, including hoarseness, sore throat and a cough when the device is being used (this normally occurs every five minutes and lasts for 30 seconds).
The battery for the VNS device typically lasts up to 10 years, after which time a further procedure will be needed to replace it.
Deep brain stimulation (DBS)
DBS involves implanting electrodes into specific areas of the brain to reduce the abnormal electrical activity associated with a seizure.
The electrodes are controlled by an external device implanted under the skin of the chest, which is usually permanently switched on.
DBS can help reduce the frequency of seizures, but there are concerns about serious risks associated with the procedure, including bleeding on the brain, depression and memory problems.
A ketogenic diet a diet high in fats and low in carbohydrates and protein, and it is thought that it may make seizures less likely by altering the chemical composition of the brain.
It was one of the main treatments for epilepsy used before AEDs were available, but is no longer recommended for adults with the condition because a high-fat diet is linked to serious health conditions, such as diabetes and cardiovascular disease (CVD).
However, a ketogenic diet is sometimes advised for children with seizures that are difficult to control and have not responded to AEDs because it has been shown to reduce the number of seizures in some children. It should only be used under the supervision of an epilepsy specialist with the help of a dietitian.
Good epilepsy care
The Department of Health has developed a National Service Framework (NSF) for long-term conditions.
This gives guidance to doctors, nurses and healthcare staff on how to provide care to patients. It was developed in consultation with people with long-term neurological conditions, including epilepsy. It tells staff how to give services that are co-ordinated, matched to people’s needs, and easy to use.
Patients can also use the National Service Framework. It can:
- provide information and support to help you make decisions about your care
- give you a choice about how and where you get treatment and care
- help you live more independently
The National Institute for Health and Care Excellence (NICE) has also published guidelines on the diagnosis and management of the epilepsies in adults and children
The guidelines give comprehensive and objective information on the benefits and limitations of the various ways of diagnosing, treating and caring for people with epilepsy. They can help health professionals and patients decide on the most appropriate treatment.
There are several complementary therapies that some people with epilepsy feel work for them. However, none has been shown conclusively in medical studies to reduce seizures.
Therefore, you should treat with caution advice from anyone other than your GP or epilepsy specialists to reduce or stop taking your anti-epileptic medication and try alternative treatments. Withdrawing anti-epileptic medication without medical specialist supervision may result in seizures.
Herbal remedies should also be used cautiously because some of their ingredients can interact with anti-epilepsy medication. St John’s Wort, a herbal remedy used for mild depression, is not recommended for people with epilepsy because it can affect the blood levels of anti-epilepsy medication and may affect seizure control.
For some people with epilepsy, stress can trigger seizures. Stress-relieving and relaxation therapies such as exercise, yoga and meditation may help.