This brochure gives an overview of epilepsy, living with epilepsy and the support you can get from Epilepsy Action.
Diagnosis
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Having a suspected seizure
If you have had a suspected seizure, you may either visit A and E, or you should see your GP. If the medical professional thinks you might have epilepsy, they will usually arrange for you to see an epilepsy specialist at the hospital.
This is to make sure you get the right diagnosis and have the best treatment for your epilepsy. The epilepsy specialist is usually a neurologist (for adults) or a paediatrician (for children).
If there is an epilepsy clinic in your area, your GP will usually refer you there. Epilepsy clinics provide things like ‘fast-track’ appointments for people who have had their first seizure, and the latest scanning equipment.
Your epilepsy specialist appointment
There are a number of conditions that can cause symptoms similar to epilepsy, so it can take a while to diagnose. To help them make a diagnosis, your epilepsy specialist will take a full description of your symptoms. They may also arrange for you to have some tests.
Your specialist will want to know as much as possible about what happens to you during seizures.
You can help them by:
- Taking a detailed diary of your seizures to your appointments. This should show the dates, times and a description of what happened, and how you felt before and after
- Taking someone with you who has seen your seizures. Alternatively, a written description from someone who has seen your seizures would be really helpful
- Taking some video clips of your seizures to the appointment, if possible
Tests used in the diagnosis of epilepsy
There are a range of tests used to help diagnose epilepsy. You might have had some in hospital soon after your seizure, and your specialist may arrange for you to have others if needed.
- An electroencephalogram (EEG) uses sensors placed on your scalp to record brain activity.
- A magnetic resonance imaging (MRI) scan is a test to check for any damage in your brain
You may also have ECG and blood tests:
- An electrocardiogram (ECG) 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. If your specialist thinks you might have a type of genetic epilepsy, they may refer you for genetic testing.
Tips for preparing for your appointment
- Take someone with you, if you can. 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
- If possible, ask someone to film you during a seizure. Showing video clips of your seizures to your doctor can be really helpful when they are considering a diagnosis of epilepsy
- 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
Being diagnosed with epilepsy
If the epilepsy specialist diagnoses you with epilepsy, they should tell you what type of epilepsy you have and the name of your seizures. They should also give you information about your treatment options, and about living with epilepsy, including safety risks and how to reduce them.
When you are first diagnosed with epilepsy you are likely to have lots of questions. Below are some questions you might want to ask a healthcare professional. For some people this might be their GP or epilepsy specialist. For others, it might be an epilepsy specialist nurse.
Newly diagnosed with epilepsy - your guide
If you or someone you care about has just been diagnosed with epilepsy, then this information is for you.
You might also find these questions helpful if you are having a review of your epilepsy:
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