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 family doctor or epilepsy specialist. For others, it might be an epilepsy specialist nurse. You might also find these questions helpful if you are getting 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, if possible take a written description of what happens for you when you have a seizure
- Or ideally ask someone to try to get a video clip of your seizure. It can be really helpful when clarifying a diagnosis
- 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
- Why do you think I have developed epilepsy now?
- Has my epilepsy got a particular name?
- What is the outlook for my epilepsy?
- What possible triggers are there for my seizures?
- 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?
- Would I ever need urgent medical attention for my epilepsy?
- Are there any over-the-counter medicines that I would need to check about before taking them?
- Is anyone else in my family likely to be affected?
- Can you explain how the driving regulations will affect me?
- Is there anything it’s not safe to do?
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
Contact Epilepsy Action for an epilepsy care plan booklet
If you have more questions about your medicines you can also ask your pharmacist.
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.
Epilepsy Action also has information about the following things:
- What epilepsy is
- Diagnosing epilepsy
- Epilepsy medicines
- First aid
- Getting the right treatment and care for your epilepsy
- Driving and epilepsy
Information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action freephone Helpline on 0808 800 5050.
Epilepsy Action would like to thank Jane Archibald, Epilepsy Nurse Specialist, and Dr Tzimas, neurologist of Cumbria Partnership NHS Trust UK, for reviewing this information.
They have no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated February 2018To be reviewed January 2021