Diagnosing epilepsy
What would you like to find out today?
Key points
- If you have a seizure, it’s important to see a doctor so they can find out why it happened
- Having a seizure does not always mean that you have epilepsy
- How long an epilepsy diagnosis will take depends on a few things, including where you live and what your symptoms are
- There is no single test that can diagnose epilepsy. You will probably have a few medical tests
- Your doctor will need to understand what your symptoms are and what happens when you have a seizure before they can diagnose epilepsy
- You must tell the DVLA if you have had a seizure and stop driving
- There are things you can do to stay safe while waiting to see an epilepsy specialist
- It’s important to look after your mental health while going through a diagnosis of epilepsy
Do I have epilepsy?
Epilepsy is a condition that affects the brain. The condition can start at any age and there are many different types. There are also different types of epileptic seizures. Find out more about what epilepsy is.
Epilepsy is usually diagnosed:
- If you have more than one seizure or
- If your specialist thinks there is a high chance you could have more than one seizure, based on your medical history or test results
Epilepsy should be diagnosed by a neurologist. We call these epilepsy specialists on this page. We have more information if you have been diagnosed with epilepsy.
Sometimes other things can look like and be mistaken for epileptic seizures:
- Fainting, or low blood pressure problems
- Heart rhythm problems
- Panic attacks, dissociation and non-epileptic seizures
- Migraine
You may not have another seizure. But it is important to try and find out why a seizure happened.
What should I do if I think I’ve had a seizure?
Call 999 if someone is having a suspected seizure for the first time.
You should see your GP as soon as possible if you, or someone you care for, has had a suspected seizure and you did not go to the hospital at the time. Anyone who has had a suspected seizure should have an ECG (electrocardiogram) to exclude a heart problem. You will likely have other tests too.
Driving
You must stop driving and tell the DVLA if you have a seizure for the first time. This rule applies whatever vehicle you drive, including motorcycles.
How is epilepsy diagnosed?
There is no single test that can confirm an epilepsy diagnosis. Your doctor will need to assess your symptoms thoroughly. You may also have several medical tests at A&E or through your GP.
Your doctor will refer you to a specialist if they think you have had an epileptic seizure. You will usually see a neurologist. This is someone who is an expert in conditions that affects the brain and nerves. Neurologists who specialise in epilepsy are also sometimes called epileptologists.
Your doctor will send you to an epilepsy clinic if there is one in your area. Epilepsy clinics provide things like ‘fast-track’ appointments for people who have had their first seizure. They may also have the latest equipment for medical tests.
Your GP may be able to arrange some tests while you are waiting to see a specialist. For example, blood tests or an ECG (electrocardiogram), which is a test to check your heart activity.
Children
Your doctor should refer children and young people to a children’s doctor (known as a paediatrician) with expertise in assessing first seizures and diagnosing epilepsy.
Children under 2 years old should be referred urgently to a paediatric neurologist for a quick assessment.
How long will it take to see a specialist?
Epilepsy services are set up differently across the UK.
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In England
The NICE (National Institute for Health and Care Excellence) guidelines on epilepsy apply to Wales, England and Northern Ireland. They say that after a first suspected seizure, children over 2, young adults and adults should see an epilepsy specialist. This should be within 2 weeks of your GP making the referral.
The NICE guidelines are recommendations, and not law. In reality, how long it takes to see a neurologist for the first time will vary. It depends on how many appointments are available and how many people are on the waiting list. In England, the NHS Constitution says you have the right to see a specialist and start treatment within 18 weeks of your referral.
The website My Planned Care NHS can give you an idea of waiting times in your area and advice about preparing for appointments.
Find out more about your treatment if you live in England.
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In Scotland
Epilepsy services in Scotland may be different if you live near a city like Glasgow or Edinburgh, or if you live in a very rural area.
Your epilepsy diagnosis and treatment will follow SIGN (Scottish Intercollegiate Guidelines Network) guidelines.
The timing should follow the Waiting Time Guarantee guidance. This says that you should be able to have an appointment within 12 weeks of the referral. Some people may have to wait longer because of the high demand on NHS services.
Find out more about your treatment if you live in Scotland.
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In Wales
The NICE (National Institute for Health and Care Excellence) guidelines on epilepsy apply to Wales, England and Northern Ireland. They say that after a first suspected seizure, children over 2, young adults and adults should see an epilepsy specialist. This should be within 2 weeks of their referral.
The NICE guidelines are recommendations, and not law. In reality, how long it takes to see a neurologist for the first time will vary. It depends on how many appointments are available and how many people are on the waiting list. But you should be seen within NHS maximum waiting times. In Wales, NHS targets say you should be able to start treatment within 26 weeks.
Find out more about treatment if you live in Wales.
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In Northern Ireland
Epilepsy services in Northern Ireland are currently affected by a shortage of neurologists and epilepsy specialist nurses (ESNs). This might cause delays to your treatment and care, such as waiting to be seen in a first seizure clinic.
The NICE (National Institute for Health and Care Excellence) guidelines on epilepsy apply to Northern Ireland, England and Wales. They say that after a first suspected seizure, children over 2, young adults and adults should see an epilepsy specialist. This should be within 2 weeks of your GP making the referral.
The NICE guidelines are recommendations, and not law. In reality, how long it takes to see a neurologist for the first time will vary. It depends on how many appointments are available and how many people are on the waiting list. But you should be seen within NHS maximum waiting times.
The Public Health Agency Health and Social Care Board sets out targets for waiting times. Currently the actual waiting times for first appointments and reviews are much longer than the target. The neurology services are working hard to see how they can improve this.
At first you are likely to see a neurologist. You may be referred to the Regional Services in Belfast if you need a more specialist doctor and there isn’t one within your trust.
Find out more about treatment if you live in Northern Ireland.
How do I stay safe while I wait for an appointment?
After a first seizure, the hospital doctor, GP or specialist should give you information about:
- How to recognise another seizure
- First aid for seizures and safety guidance
- Any changes you can make to reduce the risk of another seizure
There are things that can be a seizure trigger for some people. You may find it helpful to:
- Avoid alcohol and illegal or recreational drugs
- Find ways to reduce stress
- Try to get good sleep
- Avoid flashing or flickering lights. Some people have photosensitive epilepsy
Seizures can put you at risk of accidents, so it’s a good idea to think about safety while waiting for a diagnosis. You may find it helpful to:
- Have showers rather than baths
- Avoid working at height
- Don’t let children play in high places
- Don’t go swimming or do any water sports on your own. For example, open water swimming
It may also be useful to carry identification when you’re out and about, just in case. Find more safety advice for people with epilepsy. If you are a parent, you may find this safety information useful.
Contact your GP for advice if you have another seizure while waiting for your appointment with a specialist.
Calling the emergency services
Call 999 if:
- You know it’s the person’s first seizure
- A seizure lasts more than 5 minutes
- The person has more than one seizure without recovering in between
- A person has breathing problems, or needs emergency attention for any other reason
Sometimes after a seizure people might feel confused or behave differently. Call 999 if you think they could be putting themselves or others in danger. Don’t hesitate to call 999 if you think someone needs urgent medical attention.
Got any questions?
Our expert advisors can help you with any questions you might have about diagnosis or anything else related to living with epilepsy.
What happens at my first appointment with the specialist?
Your epilepsy specialist will ask you about your symptoms and your general health.
In most cases, it is not clear what causes epilepsy. But there are some things that may make epilepsy more likely to develop. These include:
- A family history of epilepsy or other brain (neurological) illness
- Head injury
- A genetic condition that is known to be linked with epilepsy, such as tuberous sclerosis or neurofibromatosis
- Being born before 37 weeks of pregnancy (premature)
- Infections, such as meningitis or encephalitis
- Blood flow problems or stroke.
- Dementia
Your specialist will want to know as much as possible about what happens to you during seizures. They may ask you things like:
- Where did the seizure happen?
- What were you doing before the seizure?
- How were you feeling before the seizure?
- Was there anything that triggered your seizure?
- Did the seizure affect your memory? If so, how long did this last?
- How long did it take for you to recover from the seizure?
They may also arrange for you to have some tests.
Tips for preparing for your appointment
- Take someone with you, if you can. Ideally, this should be someone who has seen your seizures. They can support you and explain exactly what happens when you have a seizure
- If you can’t take someone with you, try to take a written description of what happens when you have a seizure
- Keep a seizure diary and take it to your appointment
- Organise your thoughts before you go, for example by making brief notes or a list of questions
- Try to make sure your questions are answered. If there’s not enough time to cover all your questions, ask for another appointment
Filming your seizures
If possible, ask someone to film you during a seizure on their phone. Or, try to film the person you care for having a seizure.
This may not feel like a natural thing to do. But showing video clips of a seizure to a doctor can be a very helpful way of getting the right diagnosis.
Make sure the person having a seizure is safe before you start filming. Move anything that could hurt them out of the way first and note the time the seizure started.
What medical tests will I need to diagnose epilepsy?
There are lots of tests that can help diagnose epilepsy. You might have some in hospital soon after your seizure, and your specialist may arrange for you to have others if needed. These might include:
- An EEG (electroencephalogram) uses sensors placed on your scalp to record brain activity.
- An MRI (magnetic resonance imaging) scan is a test to check for any problems in your brain that can sometimes cause epilepsy
- An ECG (electrocardiogram) is a test to check your heart activity. It’s used to check for any heart-related conditions that can cause symptoms that look like a seizure
- You may also be offered blood tests to check your general health and to see if any other conditions may be causing your symptoms
- You may be referred for genetic testing if your specialist thinks you might have a type of genetic epilepsy
If these tests do not show anything, it’s still possible you have epilepsy. Some people may be diagnosed with the condition based on their symptoms alone.
Is it possible to be misdiagnosed with epilepsy?
About 20 in 100 people (20%) diagnosed with epilepsy are wrongly diagnosed. It’s also possible to be wrongly diagnosed with another condition. There are many reasons why this may happen including:
- There is no single test that can confirm epilepsy
- Test results may be misunderstood
- Your symptoms and medical history are not taken accurately.
If you think your symptoms have been misdiagnosed, it may be worth asking your specialist to go through your diagnosis with you.
Your GP may be able to refer you to another specialist if you’re still concerned about the diagnosis.
Looking after your mental health during diagnosis
Wondering if you, or someone you care for, has epilepsy is likely to cause some anxiety.
This is natural, but if your worries feel like they are taking over, you may need some help, such as talking therapies. We have more information about getting support for your mental health.
Our helpline is here to offer advice and answer your questions about epilepsy.
Newly diagnosed with epilepsy - your guide
Getting an epilepsy diagnosis can be overwhelming. We are here to support you. This information will help you think about your next steps.
