If you would like to talk to someone about epilepsy, our trained advisers are here to help.
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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.
You might also find these questions helpful if you are having a review of your epilepsy:
Questions for your doctor
- About your epilepsy
- How does epilepsy medicine work?
- When should I take it?
- Must I take it exactly as stated?
- What are the possible side effects of my medicine?
- Which side-effects are important to see you about?
- What will happen if my medicine doesn’t work?
- What happens if I miss a dose, am sick, or have diarrhoea?
- Is my medicine safe to take during pregnancy?
- Would I ever need urgent medical attention for my epilepsy?
- How should people around me keep me safe if I have a seizure?
- Are there any over-the-counter medicines that I would need to check about before taking them?
- Can you explain how the driving regulations will affect me?
- Is there anything it’s not safe to do?
- Am I at risk of sudden unexpected death in epilepsy (SUDEP)? What can I do to reduce the risk?
You might want to discuss an epilepsy care plan with your doctor. This is a booklet that can be filled in and updated by you and any professionals you see about your epilepsy. You can use it to make a note of things such as:
- What happens to you during a seizure
- How long you take to recover from a seizure
- How long your seizures normally last
- What to do if your seizures last longer than usual
- Anything that makes your seizures more likely
- Which epilepsy medicine you take
- The details of your doctors
Download an epilepsy care plan booklet.
In England, Wales and Northern Ireland, the National Institute for Health and Care Excellence (NICE) makes recommendations about diagnosing and treating people with epilepsy.
NICE recommends that children and young people should have a regular review with a doctor or nurse at least once a year.
If you are an adult, NICE says you should have a review at least once a year if any of these things apply:
If you are still having seizures, NICE also says you should be offerred an appointment with an epilepsy specialist nurse at least twice a year, and after any visits to A&E.Even if none of these things apply to you, you can still ask for a review of your epilepsy if you have any concerns. Examples of times you might ask for a review include if you:
- You have a learning disability
- You have drug-resistant epilepsy (meaning you have tried 2 or more epilepsy medicines and are still having seizures)
- You are at high risk of sudden unexpected death in epilepsy (SUDEP)
- You have another serious health problem alongside your epilepsy, such as a complex mental health problem
- You are taking epilepsy medicine that has a risk of long-term side effects or interactions with other medicines
- You are able to get pregnant and are taking sodium valproate or another medicine that has a high risk of causing problems if taken during pregnancy
- Want to discuss stopping or changing your medicine
- Are planning to get pregnant
The Scottish Intercollegiate Guidelines Network (SIGN) Guidelines make recommendations about epilepsy treatment for people in Scotland. The SIGN guidelines say that everyone with epilepsy should have a review once a year.
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