Questions to Ask at Your First Neurology Appointment

Being referred to a neurologist for the first time after an epilepsy diagnosis can feel daunting. There’s often a lot of information to take in, and it can be easy to forget the questions you wanted to ask. Preparing in advance can help you feel more confident and ensure you leave the appointment with a clear understanding of the next steps.

To help you get started, here are some useful questions you may wish to take with you. Not every question will apply to your situation, and your neurologist may cover many of these points without you asking. Use this list as a guide to start conversations and make sure you leave with the information you need.

1. What type of epilepsy do I have?

Epilepsy isn’t the same for everyone. Asking your neurologist about your specific type and seizure pattern can give you a clearer picture of what to expect and how best to manage it.

2. What might be triggering my seizures?

Some people find that lack of sleep, stress, flashing lights, or other factors influence their seizures. Ask if there are any triggers you should look out for and how best to track them.

3. What treatment options are available?

Your neurologist may recommend starting with medication, but it’s worth asking about the different types, how they work, and what alternatives might exist if the first choice doesn’t suit you.

4. What side effects should I watch for with my medication?

Most epilepsy medicines are effective, but they can also have side effects. Knowing what to look out for will help you feel more prepared and make it easier to discuss any problems if they arise.

5. How will we monitor my progress?

Ask how often you’ll need to see your neurologist, what tests or scans may be repeated, and how you can keep track of your seizures between appointments.

6. What should I do if I have another seizure?

It can be reassuring to have clear guidance on when to call an ambulance, when to contact your neurology team, and when you can manage safely at home.

7. Can I continue with work, school, or driving?

Practical questions about daily life are important. In the UK, for example, driving restrictions apply after a seizure. Your neurologist can explain the rules that affect you and what adjustments might be needed at school or work.

8. How will epilepsy affect my lifestyle?

You may want to ask about exercise, travel, hobbies, or other activities. Many people continue to enjoy a full and active life, but your neurologist can guide you on anything that might need adapting.

9. How does epilepsy affect mental health?

Living with epilepsy can impact mood, memory, and wellbeing. Ask what signs to look out for and what support is available if you feel anxious, low, or overwhelmed.

10. What should my family or friends know about seizures?

It’s useful to understand what those around you should do if you have a seizure. Your neurologist can explain basic seizure first aid and help you share that information with others.

11. Are there any safety precautions I should take at home?

From cooking and bathing to looking after young children, there may be safety considerations your neurologist can highlight, so you and your loved ones feel reassured.

12. Are there any lifestyle changes that could help?

Some people benefit from improvements in sleep routine, stress management, or diet. Ask what evidence-based changes may support your treatment plan.

13. What happens if my seizures don’t improve?

It’s sensible to ask about the long-term plan. What would the next steps be if your current treatment isn’t effective? Understanding the options early on can give you confidence in the process.

14. Who do I contact if I have questions between appointments?

Knowing who to reach out to – whether that’s an epilepsy nurse, GP, or the neurology department – can make a big difference when new questions come up after you’ve left the clinic.

15. Where can I find reliable information and support?

There is a lot of information online, not all of it accurate. Ask your neurologist to recommend trusted organisations, charities, or resources where you can learn more.

Preparing for your appointment

• Write down your questions in advance so you don’t forget them.
  
• Bring someone with you if possible – they can help take notes or remind you of what was said.
  
• Keep a seizure diary and bring it along, as this can give your neurologist a clear picture of what’s been happening.
  

Final thoughts

Your first neurology appointment is the beginning of a journey towards understanding and managing epilepsy. By asking questions, taking notes, and being open with your healthcare team, you’ll be better placed to make informed decisions about your care.

Remember, the information here is a starting point. For advice tailored to your situation, always speak directly with your healthcare professional.