What to Ask at Your Epilepsy Appointment – Epilepsy: The Untold Side

The questions you may not know to ask.

An epilepsy appointment can be short. There may be test results to discuss, medicines to review and seizures to describe. Important questions about safety, side effects, recovery, long-term risks and everyday life can easily be left until another day.

Sometimes people only discover much later that there was something they could have asked about earlier. This page is designed to help you prepare.

You do not need to ask every question. Choose the ones that matter to you, write them down and take them to your appointment.

Before your appointment

a list of your current medicines and doses
your seizure diary or seizure records
dates of recent seizures
photographs or videos of events, if safely recorded
information from someone who has witnessed your seizures
a list of side effects or changes you have noticed
your questions
details of any medicines you take for other conditions

If you use The Untold Side Companion App, you can use your saved records and doctor summary to help prepare.

Seizure Diaries and Recording Seizures →
What to record before, during and after a seizure, how witness descriptions can help, and why recovery details can be important at an appointment.

WHAT?

What exactly is my diagnosis?

What type of epilepsy do I have?
What seizure type or seizure types do I have?
Do I have a recognised epilepsy syndrome?
How certain is the diagnosis?
Is there anything else that could explain these events?
What did my EEG actually show?
What did my MRI show?
Can I still have epilepsy if my EEG or MRI is normal?
Do any of my results suggest where the seizures begin?
Do we know what caused my epilepsy?

If the cause is not known, ask whether further testing could help.

WHERE?

Where might my seizures begin?

Do you know which part of my brain the seizures are starting in?
Which symptoms make you think that?
Does my EEG agree with my MRI and seizure symptoms?
Could the seizure be starting somewhere deeper than the scalp EEG can detect?
Are the seizures staying focal or spreading to other brain regions?

It is also reasonable to ask: What do you still not know?

WHO?

Who should I contact between appointments?

Who is responsible for my epilepsy care?
Do I have access to an epilepsy specialist nurse?
Who do I contact if my seizures change?
Who do I contact if I develop medication side effects?
Who should my family or carer contact if they are worried?
When should I contact my GP and when should I contact the epilepsy team?

WHEN?

When should I seek help?

When does one of my seizures become an emergency?
How long should someone normally wait before calling emergency services?
What if I have several seizures close together?
What if I do not recover in the way I normally do?
What if my breathing looks abnormal?
What if I am injured?
What if my usual seizure suddenly looks different?
Do I need rescue medication?

HOW?

How should this epilepsy be managed?

Why have you chosen this medication for me?
What is it expected to do?
How long should it take before we know whether it is working?
What happens if it does not control my seizures?
How will we decide whether to increase it, change it or add another medication?
What should happen if I have tried two appropriate antiseizure medicines and still have seizures?

Questions about your medication

Antiseizure medicines can be extremely important in controlling seizures and reducing epilepsy-related risk, but they can also cause adverse effects and interactions. Do not stop an antiseizure medicine suddenly unless a clinician has specifically advised you how to do so.

What are the common side effects?
Which side effects usually improve?
Which side effects mean I should contact you?
Which symptoms need urgent medical attention?
Can I safely take over-the-counter medicines, cough or cold remedies, supplements or herbal products with my epilepsy treatment?
Could this affect memory, concentration, mood, balance, sleep or weight?
Does it affect bone health?
Do I need blood tests or other monitoring?
Does it interact with my other medicines, supplements or alcohol?
What should I do if I miss a dose?
What should I do if I vomit after taking it?
Does it matter if the pharmacy gives me a different manufacturer or brand?

Pregnancy, contraception and reproductive health

If pregnancy could ever be relevant to you or your partner, ask early.

Does my medication affect contraception?
Could contraception change the level of my epilepsy medication?
Does my medicine carry pregnancy risks?
Would I need a medication review before trying for a baby?
Do I need folic acid before pregnancy?
Would medication levels need monitoring during pregnancy?
Could this medicine affect sperm or male reproductive health?

Ask about SUDEP

SUDEP means sudden unexpected death in epilepsy. The risk is not identical for everyone, so the useful question is not simply “Can this happen?” but “What does my own risk look like, and what can I do about it?”

What is SUDEP?
What is my individual SUDEP risk?
Which parts of my epilepsy increase or decrease that risk?
Does the type of seizures I have matter?
Does having seizures during sleep affect my risk?
Does living or sleeping alone affect the advice you would give me?
How does medication adherence affect SUDEP risk?
What can I realistically do to reduce my risk?
If I have been seizure-free for years, how does that change my risk?
Is my epilepsy now considered active, in remission or resolved?
Would stopping medication change my seizure or SUDEP risk?

More detail: SUDEP — Straight Facts →

Ask about other epilepsy-related risks

What is status epilepticus?
Could my seizure type lead to status epilepticus?
Am I at increased risk of falls or injury?
What precautions should I take around water?
Are there activities I should adapt rather than avoid completely?
Is there anything I should change about sleeping arrangements?
What should people around me know about seizure first aid?

Ask about your recovery

What is considered normal recovery after my seizure type?
How long can postictal confusion normally last?
Can memory problems happen after seizures?
Can seizures cause headaches, sleepiness, agitation, speech problems or weakness afterwards?
Which recovery symptoms should make me seek medical help?

Ask about memory, mood and mental health

Could my epilepsy affect memory or learning?
Could the medication affect cognition?
Could the area of the brain involved affect memory, language or emotions?
Should I have neuropsychological testing?
Could depression or anxiety be connected with epilepsy or its treatment?

Ask about the future

Is this epilepsy likely to be lifelong?
Is there a realistic chance of remission?
What would seizure freedom mean in my case?
If I remain seizure-free, could medication eventually be reduced?
How would you decide whether stopping medication was safe enough to consider?
What is the risk of seizures returning?

If seizures continue

At what point would you consider my epilepsy drug-resistant?
Should I be referred to a specialist epilepsy centre?
Could epilepsy surgery ever be relevant to me?
Could VNS, DBS, RNS, dietary therapy or another treatment be relevant?
Would further video-EEG, MRI, PET, SPECT, MEG or SEEG help answer anything?

Before you leave the appointment

Try to make sure you know:

WHAT you have been diagnosed with.
WHERE the seizures may be coming from, if that is known.
WHO you contact if something changes.
WHEN you should seek urgent help.
HOW your treatment and follow-up will work.

And ask one final question:

“Is there anything important about my epilepsy, treatment or safety that I haven’t asked you about?”

Do not be rushed out without the information you need

Appointments can be busy and time can be limited. That does not mean your questions are unimportant.

If something matters to your safety, medication, seizures, recovery or future, ask about it. If you do not understand the answer, say so.

If the appointment is running out of time, ask:

“I still have questions that are important to me. How can I get these answered?”

You can also ask:

“Can you write that down for me?”
“Is there information I can take home?”
“Who can I contact if I think of another question?”
“Can this be discussed with an epilepsy specialist nurse?”
“Do I need another appointment to go through this properly?”

You should not feel that you have to stay quiet because the clinic is busy.

Be polite, but be persistent.

Do not leave without understanding the information you need to make informed decisions about your epilepsy and treatment.

If there is not enough time to cover everything, make sure you know how and when the unanswered questions will be dealt with.

Want to understand something in more detail?

More detailed information is available across Epilepsy: The Untold Side.

Take your questions with you

You do not need to remember this page. Write down the questions that matter to you. Print them. Save them on your phone. Take them to your appointment. Tick them off as they are answered.

If you do not understand an answer, it is reasonable to say: “Can you explain that another way?”

An epilepsy appointment should not require you to already know everything about epilepsy in order to know what questions to ask.

Key guidance and sources

Evidence checked: September 2026.