This information is about using the National Health Service in the UK. If you are looking for information about using the health service in another country, please contact your local epilepsy organisation.
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.
Suggestions 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
Some questions for your doctor
Questions about your epilepsy
- Why do you think I have developed epilepsy now?
- Has my epilepsy got a particular name?
- What is the outlook for my epilepsy?
- Is anyone else in my family likely to be affected?
- What possible triggers are there for my seizures?
Questions about your treatment
- 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?
Questions about safety
- 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?
Epilepsy care plan
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
How often should I see a healthcare professional about my epilepsy?
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 you should have a meeting with a healthcare professional, a doctor or nurse, at least once a year. This applies whether or not you are experiencing any particular problems. It is an opportunity to make sure that you are getting the best treatment for your epilepsy. The Scottish Intercollegiate Guidelines Network (SIGN) Guidelines make the same recommendations for people in Scotland.
Where can I get more information about epilepsy?
Visit the advice and information section of our website for lots of information about epilepsy, including:
- What epilepsy is
- Diagnosing epilepsy
- Epilepsy medicines
- First aid
- Getting the right treatment and care for your epilepsy
- Driving and epilepsy
- Epilepsy and your wellbeing
Epilepsy Action would like to thank Naomi Baxter, Epilepsy Specialist Nurse at East Suffolk and North Essex Foundation Trust Ipswich Hospital, for her contribution to this information.
Naomi Baxter has declared no conflict of interest.
This information has been produced under the terms of Epilepsy Action's information quality standards.
- Updated March 2021To be reviewed March 2024