Treatment with anti-epileptic medication

• Introduction
• Dosages
• Changing anti-epileptic drugs
• Taking your medication
• Possible side-effects
• The Yellow Card Scheme
• Changes in a drug’s effectiveness
• Stopping medication
• Getting the same make of your drugs
• Drug level monitoring
• Can I drink alcohol?
• Can I breastfeed?
• Drug interactions

Introduction

Many people have their seizures successfully controlled with anti-epileptic drugs (AEDs). This is the most common way that epilepsy is treated. AEDs do not cure epilepsy. Their aim is to prevent seizures by acting in some way to control the excitability of the brain. How they do this is not totally understood. Despite this, their effectiveness in treating epilepsy has been scientifically proven.
There are several different anti-epileptic drugs available, some of which are more suitable for different seizure types than others.

• UK AED list

The doctor or specialist will decide on the most appropriate drug for you and for the type of seizures you have. It is usual to start the drug at a low dosage with a gradual increase. In this way any initial side-effects should be kept to a minimum. However, everyone is different, and some people find that they are particularly sensitive to a drug, even at low dosages. If this happens, your doctor may recommend trying a different drug.

Wherever possible, monotherapy (one drug) is the preferred current way of treating epilepsy. Where seizures are proving difficult to control with monotherapy, polytherapy (more than one drug) may be considered. Because it is thought that anti-epileptic drugs do not all work in exactly the same way, it may be that each drug could provide very different benefits which, when combined, could improve seizure control.

If you live in the UK and take anti-epileptic drugs, you do not have to pay prescription charges.

• More information about free prescriptions

Dosages

Each anti-epileptic drug has a recommended daily dosage range, and they vary greatly. For example, 500 mg of phenytoin is the recommended top of the dosage scale, whereas for sodium valproate it is 2500 mg. However, this can only be a guide for doctors when prescribing because some people may need dosages outside the usual range.

All the drugs come in varying strengths. There are different formulations available, such as tablets and capsules and liquid or crushable versions, which can be prescribed for children or those who find it difficult to swallow tablets.

Changing anti-epileptic drugs

How long it will take to gain control of the seizures varies from person to person. Some find that virtually as soon as they start to take an anti-epileptic drug their seizures stop while others find that it takes a lot longer. Prescribing drugs for epilepsy involves trial and error until the right drug or drugs at the right dosage(s) is found.

The recommended way to change to a different drug is to gradually introduce the new drug and, once the right dosage of the new drug has been achieved, to gradually reduce the old drug. This is to ensure that there is always enough medication in the body to control the seizures. This will, of course, mean taking two (or sometimes more) drugs at a time, but generally only for a short while.

It is important to bear in mind that when changing anti-epileptic drugs there is a possible risk of a change in seizure control. Because of this, your doctor may advise you to stop driving for a period of time , (possibly up to six months). For safety, you may also decide to avoid activities such as some sports, until you and your doctor feel sure that your seizures are under control.

Taking your medication

Whatever drug(s) you take, it needs to be taken daily exactly as prescribed by the doctor. This may be once, twice or, occasionally, three times a day, depending on the drug and how long it lasts in the system.

It is important to take anti-epileptic drugs (AEDs) exactly as prescribed by your doctor, because missing doses may trigger seizures in some people.

If you find it difficult to remember to take your medication, there are a few things you can do to help with this. Some people use pill organisers, which are available to buy from some chemists. Other people use alarms on their mobile phone or digital watch. If you live with another person, they might be willing to help by reminding you when your medication is due.

• Suppliers of medication aids

There is always the risk that you might forget to take your AEDs, no matter how careful you are. Therefore it would be a good idea to ask your doctor or epilepsy nurse, if you have one, for advice about what to do should this happen. This will mean you are prepared, which can be very helpful, as it's not always easy to get hold of your doctor or nurse when you need to.

It would also be advisable to ask your doctor or epilepsy specialist what to do about your AEDs if you are unwell, for example if you are sick or have diarrhoea.

It is not possible for Epilepsy Action to give specific advice on what to do if you miss your medication, as this will depend on such things as which AED(s) you are taking, the dosage, your epilepsy control and any other medical conditions you have or medication you are taking.

Possible side-effects

Many people worry about the possible side-effects of anti-epileptic drugs. These vary depending on the particular type of anti-epileptic drug, and are listed on the Patient Information Leaflet which you should receive with your drugs every time you pick up your prescription.

Reading the list of side-effects may be worrying. However, it is worth remembering that those listed are only possible, in some cases very rare, side-effects and will not affect everyone who takes the drug. Most people will experience few or relatively mild side-effects.

If you experience mild side-effects be sure to mention them to doctor on your next visit. If they are more severe, contact your doctor immediately. However, it is important never to just stop taking a drug without medical advice as you could have a seizure.

You may experience side-effects such as drowsiness or dizziness, in the early days of taking the medication, while your body is adjusting to taking the drugs. Once this has happened, these side-effects should lessen or disappear completely. If they do not lessen or disappear, then it is important to talk to your doctor again who may suggest changing either the dosage or the drug itself.

Most side-effects of anti-epileptic drugs are short term, but longer term side-effects can occur when certain drugs - usually the older types used to treat epilepsy - are taken for a long time. These may include poor memory and concentration, irritability and overactivity in children, swollen gums, acne and weight gain. Some research has shown that taking certain anti-epileptic drugs may cause bone problems such as osteoporosis (brittle bone disease) and osteomalacia (softening of the bones) in the long term.

• More information about osteoporosis/osteomalacia and anti-epileptic medication.

The range of safe, reliable anti-epileptic drugs available means that if you do suffer unacceptable effects with one, the doctor can usually switch you to another that may suit you better.

• More information about drugs and their side–effects in the Medicine Guide

Even so, you may be faced with a tricky choice between having no seizures but some side-effects, or having some seizures but no side-effects. It's your decision but it's advisable to discuss this with your doctor or epilepsy specialist so that you can be aware of all the options.

The Yellow Card Scheme

lf you live in the UK and suspect that you have experienced any side-effects from your anti-epileptic drugs, you may wish to report these to the Medicines and Healthcare products Regulatory Agency (MHRA) This is a government agency which monitors the use of medicines and medical devices in the UK to ensure that they are acceptably safe.

You can report suspected side-effects by completing a Yellow Card. These are forms that are available in pharmacies, doctors' surgeries and other NHS outlets across the UK. Alternatively, you can report suspected side-effects on the Yellow Card website or by phoning the Yellow Card hotline, freephone: 0808 100 3352.

If you would like help with completing the form, you can ask your doctor, pharmacist or any health care professional.

Changes in a drug's effectiveness

Occasionally people feel that their anti-epileptic drug (AED) is no longer working as well as it once did. There can be a number of reasons for this. For example, you may have experienced weight changes, have suddenly taken up vigorous exercise, or may not be getting enough sleep. In some cases it may be that there is a change in the epilepsy itself or any underlying cause.

If your AED does not appear to be controlling your seizures it is important to talk to your doctor. It is important that any alteration to treatment, including a change in dosage, is carried out under medical supervision. This may be your family doctor, epilepsy specialist or epilepsy specialist nurse.

Stopping medication

Although anti-epileptic drugs can control seizures, they cannot cure epilepsy. This is why they need to be taken every day to help stop seizures from happening.

Some people who have been seizure free for a number of years may wish to reduce or withdraw their anti-epileptic medication. Other people may prefer to stay on their anti-epileptic medication. It is important not to attempt to reduce or withdraw medication without specialist advice. There can be no guarantees about whether or not your seizures would return if you did reduce or withdraw your medication.

A number of factors have to be considered, including whether there is a physical cause for your epilepsy and how long it took for your seizures to be controlled. If it is decided to come off medication, it is usual for this to be a very gradual process as abrupt withdrawal can, in itself, trigger a seizure. Some types of epilepsy, such as Juvenile Myoclonic Epilepsy, respond well to anti-epileptic drugs, but the majority of people with this type of epilepsy need to take medication for life. This is because there is a high instance of seizures recurring when drugs are stopped.

Getting the same make of your anti-epileptic drugs every time

Sometimes when you pick up your prescription of anti-epileptic drugs, you may notice that they look different. For example there might be a different brand name on the box, or the tablets might be a different shape or colour.

For some people with epilepsy the small differences between different versions of anti-epileptic drugs could mean that changing brands could affect their seizure control and cause them to have more side-effects.

Not all specialists agree on this issue but Epilepsy Action's advice is that if your epilepsy is well controlled with your current anti-epileptic drug it is advisable that you do not change your brand of medication.

More information on always getting the same make of your anti-epileptic drug

Drug level monitoring

In the past, it has been almost routine for a person to have the level of anti-epileptic drugs (AEDs) in their blood measured when they have gone to their GP or hospital for their regular check up. The results of these blood level tests have sometimes led doctors to increase or decrease a person’s AEDs. In some cases this has led to a breakthrough in seizures or unwanted side-effects. These tests are no longer routine, because it is recognised that they do not necessarily give doctors accurate information.

It is now recommended that blood tests are only taken to answer particular questions.

• Is the person taking their medication?
• Is the person experiencing side-effects because the dosage is too high?
• Is another drug the person is taking interacting with their AED?

An exception to this is for the drug phenytoin, where routine drug level monitoring may be recommended.

Blood levels may also be taken if:

• the person is to undergo surgery
• the person is pregnant
• the person is seriously ill with organ failure.

Can I drink alcohol?

If you are taking drugs that act on the brain - like anti-epileptic medication – you are likely to be more sensitive to the effects of alcohol. The intoxicating effects of the alcohol will be increased. It is also worth bearing in mind that the alcohol can exaggerate some side-effects of anti-epileptic medication. For example, carbamazepine can cause dizziness, drowsiness or headaches, all of which can be made worse by alcohol consumption. This does not mean that you should miss taking your anti-epileptic medication before having a drink.You are far more likely to have a seizure by missing your medication than by having an occasional drink.

• More information about alcohol, recreational drugs and epilepsy

Can I breastfeed?

Generally the small amount of anti-epileptic drug that gets into your breast milk is very unlikely to affect your baby. However, it is advisable to discuss breast feeding with your midwife and your epilepsy specialist, so you can decide what is best for you and your baby.

Drug interactions

Many anti-epileptic drugs (AEDs) can affect each other as well as other medications. One AED can raise or lower the level of another AED in the blood when they are taken at the same time. This is one of the reasons why prescribing AEDs is so complex.
Some AEDs interact with the contraceptive pill, reducing its contraceptive effects. Other medications taken for different conditions may also interact with AEDs so this needs to be taken into account when they are prescribed. If you have any concerns about something you are taking, talk to your doctor or pharmacist.

• See also: contraception

As well as interactions between drugs, some medications can make you more likely to have a seizure if you have epilepsy, or a history of seizures. For example, most antidepressants, the sedating group of antihistamines and some anti-malaria treatments can make seizures more likely if you have epilepsy.

However, just because these substances can increase the likelihood of seizures, it does not mean that they cannot or should not be taken. The risks and benefits of taking the medication need to be considered. Malaria, for example, can be fatal. For some people their depression can be so severe that there is little choice as to whether they take antidepressants. It is important to be aware of all the issues so that you can make an informed decision.

Most 'off-the-shelf' treatments are safe for people with epilepsy, but not all. Always read the information given on and in the packet carefully and check with your pharmacist or doctor. Some treatments which are not subject to regulation - such as herbal medicines - may not always have adequate information included. Again, check with your doctor or pharmacist.

Further information on treatment with anti-epileptic drugs is available from Epilepsy Action by using the Email Helpline or if you live in the UK, by phoning the Epilepsy Helpline, freephone on 0808 800 5050.

11 July 2006