1. Bring your seizure diary
Sharing a seizure diary with your epilepsy healthcare professionals can help to:
- Diagnose epilepsy, if you are having suspected seizures
- Help you decide what happens next in your epilepsy treatment
Try to record things like:
- The date and time of the seizure
- How long it lasted
- If you had a sleep seizure (if possible) or if you were awake
- If you think anything triggered the seizure
- How often you are having seizures
- How you felt after the seizure
- If you had any injuries because of the seizure
You can use our seizure diary or used an app-based tracker to record these details.
2. Bring a video of your seizures
Filming someone having a seizure may not feel like a natural thing to do. But showing video clips of a seizure can be a very helpful way of getting the right diagnosis or treatment.
Make sure the person having a seizure is safe before you start filming. Move anything that could hurt them out of the way first. Note the time the seizure started and ended.
You could bring someone with you that has seen you have a seizure, if you haven’t got a video.
3. Bring a list of your epilepsy medicines and any other medicines you are taking
Try to include:
- The date you started taking the medicine
- The name of the medicine
- The dose (how much) medicine you take
- Any epilepsy medicines you have tried before and why you stopped taking them
- Any supplements you are taking
It may also help to include:
- Any medicines you’ve missed or forgotten to take. Note the date and if you had a seizure afterwards
- Any rescue medicine (emergency medicine) you have taken and why
You can list these in your seizure diary.
4. Keep a diary of any medical changes since your last appointment
This may include if you:
- Have been admitted to hospital
- Have had any new symptoms
- Have been diagnosed with another health condition
- Are having any side effects from your epilepsy medicine
Some issues around epilepsy and its treatment are specific to women and girls. These include links between epilepsy and hormones, puberty, contraception, pregnancy and the menopause.
It may help to:
- Track your menstrual cycle
- Track any perimenopause or menopause symptoms you are having
- Tell your healthcare professional if you want to get pregnant. They can refer you for some pre-conception counselling.
5. Make a list of any questions or concerns
Write down any questions you want to ask during the appointment. Put your most important questions at the top of your list, in case you don’t have time for all of them.
You may ask things like:
- Are my seizures well controlled?
- Can I drive?
- Are there any other treatments I can try, such as surgery or a keto diet?
We have some questions you can ask your doctor if you have been recently diagnosed with epilepsy.
We have a template care plan to help you think about your goals for the appointment.
6. Make a list of all safety measures you are taking
Your healthcare professional may want to know what you are doing to keep yourself, or someone else, safe in case you have a seizure. This may include:
- Any alarms or monitors you are using
- If you are using protective headgear or safety pillows
- Any safety measures you take while looking after children
7. Think about your mental health and wellbeing
Your mental health and general wellbeing are as important as any physical symptoms. Make a list of:
- Any mood changes or symptoms, such as depression or anxiety
- Ways that epilepsy may affect your wellbeing or self-esteem at work, home, or school
8. Take a list of any lifestyle changes or life events
It may help to take a list of anything that may:
- Increase your risk of having a seizure
- Make you more likely to forget or miss a dose of epilepsy medication
Examples include:
- If you are changing your shift pattern at work, such as days to nights
- If you are going through a significant life event that causes stress, such as a bereavement
- Going abroad, especially somewhere in a different time zone or that could cause jetlag
- Any changes to your sleeping habits and any alcohol or drug use
Try to be honest about anything that may affect your condition. Your healthcare professional is there to help you, not judge you.
9. Collect any previous medical records
This may help if you are having a first appointment with a healthcare professional.
You can log in to the NHS App or NHS website to view your GP record online. This can include information like allergies, medications, and test results. You can also ask your GP surgery for this information.
NHS has more information about seeing your GP health record.
Contact the records manager or patient services manager at the relevant hospital trust for your hospital records. You can find a list of hospital trusts and their contact details here.
10. Ask someone you trust to come with you for support
You may not always need someone with you. But another person may help you make the most of medical appointments. Especially if you are feeling nervous or tired.
Another person can:
- Tell a healthcare professional how epilepsy affects you from what they have seen
- Understand what your goals are and advocate on your behalf. Ask questions, take notes and remind you later what was said
- Help you feel more confident to speak up