Questions for Your Neurologist About Epilepsy

For a neurology appointment you need three things: a short list of questions, a description of your seizures, and your records. Pick three to five questions from the list below and ask the most important first. You can log your seizures in the seizure diary in Sam, which turns into a doctor report as a PDF for the visit. This is general information, not medical or legal advice.

The list is not a recommendation. It gathers what the NHS, Epilepsy Action and specialists commonly raise. Your doctor gives the answers, not this text.

Choose your three questions first

Appointment time is short. Write down everything that worries you, even ten questions. Then pick the three you do not want to leave without answers. Say at the start that you have three questions and a note of your recent seizures. Write the answers down, and ask again when something stays unclear. The doctor visit checklist for a chronic condition applies here too.

An example with made-up details:

1. I have had two seizures at night since July. How do you read that?
2. How long does my medicine plan run, and when do we review it?
3. I want to travel next spring. What should I sort out first?

The rest stays on the page for next time.

Who is who: GP, neurologist, epilepsy nurse

The NHS says a specialist doctor looks at what caused your seizure and whether you have epilepsy, and that you will be supported by your GP and a team of specialists. Many people also have an epilepsy specialist nurse, and your pharmacist can answer medicine questions.

In England, Epilepsy Action (citing NICE guidance) says your specialist should refer you to a specialist epilepsy centre if you have tried 2 or more epilepsy medicines and still have seizures. Rules and services differ in the other UK nations and in the US. Your first appointment with an epilepsy specialist explains how that works.

Questions about your diagnosis and tests

• What is my exact diagnosis, and which seizure type is it for now?
• Which tests have been done, which are still planned, and when are the results due? The NHS lists an EEG, an ECG, scans such as MRI or CT, blood tests and sometimes genetic tests.
• Can I have copies of the results and letters?
• Could you explain that again in plain words?

If your seizures have become more frequent or different, that belongs in this conversation. For seizures around your cycle, see seizures and your menstrual cycle.

Questions about medicines (questions only)

No answers live here. Your plan is set by your care team. Helpful questions:

• How long does my plan run, and when do we review it?
• Whom do I call if I get side effects? Epilepsy Action names tiredness and feeling foggy as common ones.
• What do I do if I forget a dose, or if I am sick?
• How does my plan fit with over-the-counter products and supplements?
• What are the alternatives, and what are the trade-offs?

Say openly if you take anything differently to how it is prescribed. Your team can only work with what it knows. Never change or stop a medicine without speaking to them. The NHS says do not change your dose or stop without talking to your specialist.

You can log what you take in medication in Sam. Set the name, dose and times as prescribed, and tick each dose taken, adjusted or skipped. Sam gives no dosing advice.

Daily life and your rights: general points only

This text gives no rules here, because rules differ by country. Ask your specialist or your epilepsy nurse. Useful questions:

• What should I watch in work and daily life, including sport and travel?
• How can I make my home safer if a seizure happens?
• Does epilepsy affect contraception, pregnancy or family planning?
• How does my epilepsy affect driving, and what must I tell the authorities? The epilepsy and driving rules cover the UK and US position.
• Where can I find more support? Charities such as Epilepsy Action in the UK and the Epilepsy Foundation in the US run helplines and local groups.

A second opinion and an epilepsy centre

You are free to ask another specialist for their view. There is nothing unusual about it. If you are unsure, raise it with your current team first. Worth asking:

• Would an epilepsy centre be useful for me?
• Which records should I gather, and will you send them on?

What to bring

Epilepsy Action suggests bringing your seizure diary, a video or someone who has seen a seizure, a list of your medicines and supplements, and your questions with the most important first. The full checklist, with letters and test results, is in what to bring to the first specialist visit. How to keep the diary is covered in keeping a seizure diary.

How to describe a seizure

Many people do not remember a seizure well. The NHS says it helps to bring someone who saw it. These points help:

• When: date, time, day or night.
• What happened: what you noticed before, then what followed step by step.
• How long it lasted.
• Consciousness and injury: did you come to? Was there a fall or an injury?
• Afterwards: how long until you felt normal?

In Sam you log date, time, type, consciousness, injury, suspected trigger and a note, and mark whether someone saw it. For today's entries, sleep, HRV and resting pulse from Apple Health sit beside them. Whether an event was a seizure or a faint is a separate question: seizure or fainting.

When a seizure is an emergency

The NHS says to call 999 if it is the first time, a seizure lasts longer than is usual for them (or longer than 5 minutes if you do not know how long theirs usually last), they do not recover as usual or have another seizure without recovering in between, or they have had 3 or more seizures in 24 hours. Use your local emergency number (112 in the EU, 999 in the UK, 911 in the US). This is general guidance and not a diagnosis. When in doubt, call.

Log your seizures in Sam and take them to the neurologist as a PDF

You arrive with a record of your course instead of describing months from memory.

• Instead of a paper list, you log each seizure with date, time, type, consciousness, injury and a note.
• Instead of Apple Health alone, today's entries show sleep, HRV and resting pulse next to them. You write down only what you know yourself.
• Instead of a medicine list in your head, you tick each dose at the set times. The report for 1, 3, 6 or 12 months shows your seizures and doses.

The Epilepsy diary is for people whose epilepsy is already diagnosed. A quiet diary never means no seizure happened. The report does not replace a clinic's own form or questionnaire.

Try Sam for free

Sam is a wellness companion, not a medical device. The app does not diagnose, treat, cure or prevent any condition or health state. Always consult qualified professionals for medical decisions.

Related reading

• Doctor visit checklist for a chronic condition
• Your first appointment with an epilepsy specialist
• Epilepsy and driving rules
• Seizures and your menstrual cycle

Sources

Updated: October 2026

• Epilepsy Action: 10 ways to prepare for healthcare appointments (published January 2026)
• NHS: Epilepsy (last reviewed 6 March 2025)
• Epilepsy Action: Referral to a specialist epilepsy centre in England
• Epilepsy Action: Epilepsy medicines (last modified July 2026)
• Epilepsy Action: Status epilepticus and rescue medicine (last modified April 2026)
• MedlinePlus, US National Library of Medicine: Epilepsy (last updated 9 January 2026)