Seeing a specialist

Seeing a specialist

When you see the specialist they should ask you, and anyone who was with you at the time, what happened when you had the seizure. Your description of what happened, and any information from witnesses, is really important, and will help the specialist to decide whether or not you may have had an epileptic seizure.

The specialist should also carry out a physical examination. This should include checks on your heart and brain. In children, the specialist may also check their development. They may also ask you to see professionals with training in other areas, such as a cardiologist (a doctor who specialises in heart problems), a psychiatrist or a clinical psychologist.

The specialist will use the information about what happened when you had the seizure and any other symptoms you have to determine whether you may have epilepsy. However, epilepsy can be difficult to diagnose, so the specialist may want to carry out some tests (see 'Tests') or refer you to a specialist centre (see 'Referral to a specialist centre') to confirm the diagnosis. Even if the specialist thinks it is unlikely that you have epilepsy, you should be offered another appointment to see how you are.

The specialist may also ask you or your family or carer to write down what happens before, during and after your seizure, and to keep a diary of when the seizures happen and what you were doing at the time. They may ask if it's possible to make a video recording of a seizure, so that they can watch it to help them find out what is causing your seizures.

Tests

If the specialist thinks that you should have some tests they should discuss with you why you need them, what exactly will happen and what they are looking for. If the tests are for a child, they should be done in a child-friendly environment. Examples of some tests you may be offered are given below.

Once you have had the tests, the results should be explained fully to you.

An EEG

EEG is short for 'electroencephalogram' and is also known as a brainwave test. It is a painless test that records the brain's electrical activity. You may be offered an EEG if the specialist thinks you have epilepsy because it may help to show whether your seizures are starting in the brain (meaning they are epileptic). However, you should not be offered this test if it is thought that you fainted or had a blackout rather than an epileptic seizure, because the EEG may give inaccurate results.

If you are offered an EEG, you should have the test within 4 weeks of the specialist requesting it.

Before you have an EEG the specialist should explain that flashing lights may be used to try to trigger abnormal electrical activity in your brain. It is possible that this could cause you to have a seizure, but only if you are sensitive to light, which is quite rare. If you decide you would prefer not to have the test you should be supported in this.

EEG results on their own are not accurate enough to show whether you have epilepsy or not – the specialist should use them along with your symptoms to help make a diagnosis. They may also help the specialist decide what type of seizure and epilepsy syndrome you have.

If after having an EEG it is still not clear whether you have epilepsy, or the type of epilepsy you have remains uncertain, you may be offered a repeat EEG. This should normally be done when you are either very tired or asleep (also called a sleep-deprived or sleep EEG)because it makes it easier to seeany abnormal brain activity.

When a child or young person is going to have a sleep EEG, their parent or carer may be asked to change their child's normal sleep patterns so that they become extra tired. Or a substance called melatonin may be used to make them sleepy.

If a diagnosis still can't be made, you may be offered an 'ambulatory EEG' or an EEG combined with video recording. An ambulatory EEG uses small electrodes to measure your brain activity over several hours, days or weeks while you continue with your daily life. In a video EEG, you will be monitored in hospital for several days. If a seizure does occur it is recorded on video and used along with the EEG to help make a diagnosis.

Neuroimaging

Neuroimaging means taking pictures of the brain. This is also called 'scanning'. It can help the specialist to see if a physical problem is causing your seizures.

You may not always need neuroimaging if you have been diagnosed with idiopathic generalised epilepsy. This is a type of epilepsy syndrome that is thought to have a genetic cause.

If you are offered neuroimaging, you should usually have a type of imaging test called an MRI, which uses magnetic fields to produce a picture of the brain. MRI is short for 'magnetic resonance imaging'. You should have this test within 4 weeks of the specialist requesting it. An MRI is particularly important if you are an adult when your epilepsy starts, if it looks like your seizures start in a specific part of the brain, or if your seizures continue after you have started taking medication. It is also important in children who develop epilepsy before they are 2 years old.

In some situations you may be offered a different imaging test called a CT scan, which uses X-rays to produce a picture of the brain. CT is short for 'computed tomography'. It may be offered if an MRI is not available or not suitable for you, or if information is needed quickly about whether your seizures are being caused by a brain injury or illness. CT scanning may also be more suitable for some children and young people who would need to have an anaesthetic to have an MRI but not for a CT scan.

Other tests

You may be offered other tests to help confirm what is causing your seizures. These might include blood tests (and urine tests for children and young people), or a test on your heart called an ECG (which is short for 'electrocardiogram'). Depending on the results of your heart test you may be offered a referral to a cardiologist (a heart specialist).

Questions you may want to ask about tests

  • Please could you give me more details about the tests or investigations you think I should have?

  • What can I expect when I have an EEG?

  • What happens with a scan?

  • Should I be having an ECG?

  • What do these tests involve?

  • Where will these be carried out? Will I need to have them in hospital?

  • How long will I have to wait until I have these tests?

  • How long will it take to get the results of these tests?

For some people with epilepsy it is important to assess learning disabilities, speech and memory (for example, if you are having difficulties at school or work, or if your memory isn't as good as it used to be). If this is the case, the specialist may offer to refer you to another healthcare professional for a 'neuropsychological assessment'.

After your diagnosis

If you are diagnosed with epilepsy you should be given a chance to talk about your diagnosis and how you feel about it with a healthcare professional – this will most likely be your specialist. Your specialist should explain what type of seizures and epilepsy syndrome you have, their possible effects, and how they might change in the future. They should help you to decide on a plan to manage your condition, and should discuss with you the importance of learning skills to increase your confidence in living with epilepsy. They should also give you details about where to find more help and support.

Who will provide your care?

When you are living with epilepsy you are likely to receive treatment and care from more than one healthcare professional. You should be given the name of one member of your healthcare team who is responsible for making sure you have all the information you need. This will usually be the healthcare professional you see most often, for example your GP or specialist. You should be advised to register with a GP if you are not already registered, and you should be given details of how to contact a specialist service if you need to.

An epilepsy specialist nurse should also be involved in your care. These nurses are trained and have experience in caring for people with epilepsy. They can provide you and your family or carer with information about epilepsy, and they can make sure that you are getting the right help and support from other healthcare professionals. They can also provide a link between you and your specialist.

Information about epilepsy

Your healthcare professional should offer you information about epilepsy in a format that you find useful. They should make sure you have relevant information when you need it (for example, before you make important decisions such as planning for a baby or decisions affecting your career or work). Every time you see your healthcare professional they should make time to check that you have all the information you need. They should use a checklist to make sure they cover everything you need to talk about.

You and your family or carer should be given information about:

  • your diagnosis and treatment options available to you, including any possible side effects of medications

  • what can trigger seizures and how to control or avoid them

  • what's likely to happen in the future

  • how to manage living safely with epilepsy, including advice about first aid

  • psychological issues, such as depression and anxiety

  • practical issues such as social security benefits, insurance issues, driving and road safety

  • education and healthcare at school

  • employment and independent living for adults

  • the importance of telling an employer if you have epilepsy (contact support groups or charities if further information is needed)

  • reducing the risk of sudden death caused by epilepsy (this is sometimes referred to as SUDEP, which stands for sudden unexpected death in epilepsy; see 'Sudden unexpected death in epilepsy')

  • status epilepticus (see 'If you have status epilepticus')

  • how epilepsy can be affected by, and can affect, your lifestyle (for example, the use of illegal drugs, alcohol, sexual activity and the effects of not getting enough sleep)

  • family planning and pregnancy

  • local and national support groups and charities, and how to contact them.

Questions you may want to ask

  • Does having sex increase my chance of having a fit?

  • Is there some written information (like a leaflet) about epilepsy that I can have?

  • Can you tell me about any support groups in the area?

Children and young people

Children and young people with epilepsy should be offered special activities tailored to their age to help them learn to manage their condition. There should also be arrangements in place for when young people make the move to adult services (see 'Special considerations for young people').

People at risk of seizures

If you have never had a seizure but you have had a severe brain injury, you have a strong family history of epilepsy or you have learning difficulties, you are at risk of developing seizures. You should be given information about epilepsy and the possibility of having seizures as soon as possible (that is, before you have any seizures).

  • Information Standard