Treatment and care

Agreeing an epilepsy care plan

Once your condition is diagnosed your healthcare professional should discuss with you possible options for your treatment and care. They should agree an epilepsy care plan with you, your family or carer, your GP and your specialist. It should cover your treatment, what to do if you have another seizure or the treatment doesn't work, and any preferences and lifestyle issues you have discussed.

Starting on epilepsy medication

You should only be offered medication for epilepsy after your diagnosis has been confirmed and if medication has been recommended by a specialist. Your specialist should have a full discussion with you about all your treatment options before you consider taking medication for epilepsy. The decision whether or not to take medication for your epilepsy should be made jointly by you (and your family or carer if appropriate) and your specialist, after the specialist has explained to you the risks and benefits of epilepsy medication, including the possible side effects of different medications and which would be most suitable for you.

Your specialist should explain that medication is usually an option once you have had two epileptic seizures. However, there are some circumstances when it may be started earlier; your specialist should discuss these with you.

Choice of medication

There are many drugs available for treating epilepsy. The one that you are offered will depend partly on your seizure type and epilepsy syndrome. Some drugs for treating epilepsy are not suitable for everyone. Your specialist should talk to you about which one might be best for you. If you want to find out more about the drugs that you may be offered, the versions of this guidance for healthcare professionals (such as the NICE guideline or the epilepsy pathway) contain more detailed information and are available at www.nice.org.uk/guidance/CG137.

Usually you will start treatment with just one epilepsy drug. This is known as monotherapy. You should be advised to keep to the same brand and not to change from one form of the drug to another, for example, changing from tablets to a liquid. This is because different preparations may work slightly differently in the body and may not control the seizures as well or may increase the side effects.

If the first drug for treating your epilepsy doesn't help

If the first drug you try doesn't control your seizures or you have side effects, you should normally be offered another drug. Your specialist should help you to switch gradually from one drug to the other. There should be a short period when you are taking both of the drugs.

If the second drug you try isn't helpful, then the dose of either the first or second drug should be gradually reduced, as outlined above, before another drug is tried. Which of the medicines to stop will depend on how well each one has worked and what side effects it has had.

If using just one drug doesn't control your seizures, your specialist may suggest taking another one at the same time. This is known as combination therapy, or sometimes adjunctive or add-on therapy or polytherapy.

If combination therapy doesn't control your seizures, you and your specialist should discuss which drugs and combinations have helped most with the seizures and caused the fewest side effects. The drug or combination that has been best is usually the one to carry on with. If you have certain types of epilepsy seizures or syndromes, and combination therapy has not worked well or you had a bad reaction to the drugs, you may be offered a referral to a specialist centre (see 'Referral to a specialist centre') to discuss other drugs you could try.

If you are still having seizures even though you are taking the most appropriate drug for you, your diagnosis should be reviewed. This may mean that you are offered more tests or referral to a specialist centre (see 'Referral to a specialist centre').

Continuing your medication

If you are taking medication for epilepsy it is likely that you will need to take it for several years. Your specialist should discuss this with you, including the possible side effects of taking your medication and what you should do if your seizures continue. These discussions should be included in your epilepsy care plan. If you are having no problems managing your epilepsy you should usually be able to get your prescription for your medication from your GP.

Taking your medication regularly

For epilepsy drugs to work best they need to be taken regularly. Your healthcare professional should make this as easy as possible, for example, by keeping your schedule for taking your medication as simple as possible so that you are less likely to forget a dose. You should also be given information about what to do if you miss a dose or have sickness or diarrhoea.

Blood tests

You should not usually be asked to have blood tests when you are taking medication for epilepsy. However, sometimes blood tests may need to be done to check how certain types of drugs for epilepsy are working. You may also need blood tests if you are taking medication for something other than epilepsy in case the different types of drugs don't work well together. Other reasons for blood tests include certain situations in pregnancy, concern that one of the body's organs is not working properly, or status epilepticus (see 'If you have status epilepticus').

For a child, blood tests should only be done if they're recommended by a specialist.

Stopping medication

If you haven't had a seizure for at least 2 years, your specialist should discuss with you the risks and benefits of continuing with your medication, or slowly stopping some or all of the drugs you are taking. Your specialist should discuss with you the possible impact of stopping treatment on the likelihood of having seizures and on your daily life before you make your decision.

If you decide to stop your medication, this should be done slowly over a period of at least 2–3 months, and a specialist should be involved. If two or more drugs are being taken, only one should be stopped at a time.

Before stopping your medication, you and your specialist should agree a plan about what should happen if your seizures start again. This should include going back to the dose level you were taking just before your seizures started again and contacting your healthcare professional.

Referral to a specialist centre

Referral for children, young people and adults

In some circumstances you may be offered a referral to a team of healthcare professionals in a specialist centre. This is also known as a 'tertiary centre' or 'tertiary service'.

The team of healthcare professionals who work at the specialist centre should be experienced in assessing people with epilepsy that is hard to treat or complicated for other reasons. The team should include people with different types of training and experience, from psychology (assessing and helping with behaviour) to occupational therapy (helping people to carry out activities in everyday living). It should include specialist nurses, and doctors who have specialised in treating conditions involving the brain with medication (a neurologist) and with surgery (a neurosurgeon).

You should be referred to a specialist centre (and seen within 4 weeks) if:

  • there is uncertainty about the type of epilepsy syndrome or seizures you have

  • your seizures are not controlled with drugs within 2 years of starting them

  • you have tried two different types of drugs but these have not worked

  • you are having, or are at risk of, severe side effects from medication

  • you have a psychological or psychiatric condition (one affecting your behaviour or your mind), or

  • there is an abnormality affecting the structure of part of your brain.

If you lose skills you had earlier (for example, a child loses the ability to talk or walk) or you develop behavioural problems, your specialist should refer you immediately to a specialist centre.

You should be referred to a specialist centre if your specialist thinks it is necessary, even if the results of the tests you have had previously are normal.

You should also be referred if you are diagnosed with a particular type of epilepsy syndrome, such as Sturge–Weber syndrome, Rasmussen's encephalitis, the hemispheric syndromes or hypothalamic hamartoma. (The organisations listed in 'More information' may provide information on different types of epilepsy syndromes.)

Referral for children and young people

In addition to the above, it is very important that children who are suspected of having developed epilepsy in the first few years of life (particularly those under 2 years old) are referred to a specialist centre as soon as possible so that they can be diagnosed and, if necessary, treated to prevent seizures from affecting their development.

If a child or young person has a certain type of epilepsy syndrome, they may also be referred to a specialist centre. For example, if an infant has infantile spasms, or a child is suspected of having Dravet syndrome or Lennox–Gastaut syndrome, they may be referred to a specialist centre to see a tertiary paediatric epilepsy specialist. This is a doctor who specialises in treating children and also specialises in treating epilepsy. If a child or young person has been diagnosed with an epilepsy syndrome such as continuous spike and wave during slow sleep, Landau–Kleffner syndrome or myoclonic-astatic epilepsy, they should also be referred to a specialist centre. (The organisations listed in 'More information' may provide information on different types of epilepsy syndromes.)

Other ways of treating epilepsy

Relaxation, cognitive behavioural therapy and biofeedback

If your seizures aren't being controlled well by medication, other approaches can be tried. Some people find it useful to learn ways of relaxing or of controlling negative thoughts and their responses to them (this is called 'cognitive behavioural therapy' or CBT). Another technique is 'biofeedback', which involves learning ways of changing the brain activity. These approaches don't replace medication, but they can be tried as an extra option.

Learning techniques (such as relaxation or CBT) may also be tried for a child if they have focal epilepsy (which means that the abnormal electrical activity is happening in a particular area of the brain) and medication on its own hasn't helped.

The ketogenic diet

The ketogenic diet is a special diet that is high in fat and low in carbohydrates. If seizures in a child or young person are not being controlled by medication, the child or young person may be offered a referral to a specialist centre to see a tertiary paediatric epilepsy specialist to discuss trying this diet. This is a doctor who specialises in treating children and also specialises in treating epilepsy. See 'Referral to a specialist centre' for more information on referral to a specialist centre.

Brain surgery

If epilepsy has been very difficult to control with medication, brain surgery may be considered for some people.

There are many different tests you might be asked to have before you are offered brain surgery. The tests are carried out at a specialist centre (see 'Referral to a specialist centre') and will help to find out whether brain surgery would reduce or stop your seizures without causing any new problems.

If the tests show that brain surgery might help, you and your family or carers should have the reasons for this explained to you, and you should have the chance to discuss these with a healthcare professional. The possible risks and benefits of the surgery should be explained in detail before you decide whether or not to have it. If you were to have surgery, this would be carried out by surgeons working in a specialist centre (see 'Referral to a specialist centre').

Vagus nerve stimulation

Vagus nerve stimulation involves having a small generator implanted into the chest. The generator stimulates the left vagus nerve, which is one of the main nerves in the body. The stimulation travels up the vagus nerve and into the areas of the brain where the seizures might begin. Vagus nerve stimulation can reduce seizures in some people. If medication hasn't worked and surgery isn't an option, you may be offered this procedure.

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