New to epilepsy: appointments, questions and your first seizure record in the first weeks

After an epilepsy diagnosis the next steps are mostly appointments with a specialist, plus checks such as EEG and MRI where they are still missing. What you can add yourself, starting today, is a record of when seizures happen and how they go. That works on paper or in Sam, where sleep, resting heart rate and heart rate variability from Apple Health sit next to every entry. Ask someone who saw a seizure to note what they observed too.

If you have had only one seizure and are waiting for an assessment, the sources below are the better start. This text begins where epilepsy has been diagnosed. It explains no treatment and does not replace a conversation with your treatment team.

What does the diagnosis mean?

The NHS says epilepsy affects your brain and causes seizures, and that it cannot currently be cured, but treatment can often help manage it. Doctors work from the ILAE definition. It covers at least two unprovoked seizures more than 24 hours apart, or one unprovoked seizure when the risk of more is as high as after two (at least 60 percent over the next 10 years), or a diagnosis of an epilepsy syndrome.

You do not have to work that out yourself. Your treatment team tells you which kind of seizures you have and what follows from it.

Which checks and appointments are coming?

The NHS says a specialist doctor checks what caused your seizure and whether you might have epilepsy. They ask about the circumstances. Tests can include an EEG, which measures electrical activity in the brain, an ECG for your heart, an MRI or CT scan, and blood tests. Genetic testing can be added when hereditary factors are suspected. One seizure does not always mean epilepsy, because seizures can have other causes.

Ask which of these have already been done and which are missing. Ask for copies of the EEG report, the scan report and letters, and keep them in one place for the next appointment.

Who is who: neurologist, epileptologist, epilepsy centre?

You see a specialist doctor for the diagnosis. Specialist epilepsy services exist in many areas. Epilepsy Action says the wait for a specialist differs by region. Whether a specialist centre is something for you, ask your neurologist.

How will my seizure be described by others?

With epilepsy a lot depends on a description that you often cannot give. The NHS says that having a witness at your appointment can help, because their observations inform the evaluation. Epilepsy Action suggests bringing someone who saw your seizures, and keeping a video if you have one.

Ask the witness to write down what they saw on the same day. Notes from the same day help more than memories after weeks. A good set of questions for them:

• When was the seizure, and how long did it last?
• What happened before?
• What happened during it, for example a movement, a fall or a bitten tongue?
• How was I afterwards?

If someone filmed a seizure, bring the video. Whether an event was a seizure or a faint is a topic of its own: seizure or fainting?.

What do I write down from day one?

A seizure record needs no fixed form. These seven details are enough to start:

• When: date and time, night or day.
• What kind: as well as you can describe it. "I do not know" is a valid entry.
• Awareness: did you notice the seizure, or is there a gap?
• Injury: yes or no, and what.
• Witnesses: did anyone see it, and who?
• Suspected trigger: only what you suspect, such as poor sleep, alcohol, illness or a missed dose.
• Note: how you felt afterwards and what you noticed.

Epilepsy Action also suggests noting how long a seizure lasted, what came before and after, how long recovery took and when you take your medicines. The NHS says a diary can help you spot triggers such as tiredness, stress, your period, flashing lights, food or drink.

An invented example: "Wed 14 Oct, 06:40, in bed. Partner saw it. Lost awareness, bitten tongue. Five hours of sleep the night before. Tired until noon." An entry may be that short.

In Sam's epilepsy program these are the same fields: time, type, awareness, injury, witnessed, suspected trigger and note. For entries made today, sleep, resting heart rate and heart rate variability come from Apple Health.

Because people often do not remember seizures, an empty record does not prove nothing happened. Write down what others tell you as well. More on keeping a record is in seizure calendar for epilepsy: template, fields and app. On sleep as a suspected trigger, see sleep and epilepsy triggers.

Which questions do I bring to the first follow-up?

Write the questions down before the appointment, the most important first:

• Which kind of seizures is it, as far as we know now?
• Which checks are still open, and when will I have the results?
• Whom can I call between appointments?
• Which details in my seizure record matter most?
• Is a specialist epilepsy service something for me?
• What applies to me for driving, work and sport?

For driving, rules depend on where you live. Ask before you drive again.

Where can I read about the hard topics?

Driving, work and first aid for others are big topics, and this text only names the essentials.

• Driving: in the UK the NHS says you must not drive after a seizure until you meet DVLA rules. Epilepsy Action says many people with epilepsy can drive if they meet the rules for their type of seizures. Rules differ by country and region, so ask your treatment team.
• First aid for people near you: the CDC says to call emergency services (your local emergency number: 112 in the EU, 999 in the UK, 911 in the US) if a seizure lasts longer than 5 minutes, another follows shortly after, the person struggles to breathe or wake up, there is an injury, it happens in water or it is the person's first seizure. The NHS gives similar advice, and adds three or more seizures within 24 hours. Show this list to the people who are often with you.
• Support: in the UK, Epilepsy Action runs a helpline (0808 800 5050), which the NHS also lists.

There is no list of things you must not do here. Discuss that with your treatment team. For daily life, see living with epilepsy: triggers, sleep and daily routines.

Log seizures in Sam and take them to your appointment

You go to your appointment with a seizure record that holds time, type and your details for each seizure, from the epilepsy program.

• Instead of paper: sleep, resting heart rate and heart rate variability come from Apple Health for entries made today, and you enter only what you know yourself.
• Instead of memory: the doctor report (PDF) counts your seizures by type, how many were at night and the days since the last logged seizure.
• Instead of loose notes: if you have a prescribed medicine, you tick off each intake and can set reminders.

Sam is not meant for the moment of a seizure. You enter it afterwards, and the program starts after a doctor has diagnosed epilepsy.

Try Sam Health

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.

Sources

Updated: October 2026

• NHS: Epilepsy, Diagnosis and Treatment (last reviewed 6 March 2025)
• Fisher RS et al.: ILAE official report: a practical clinical definition of epilepsy. Epilepsia 2014;55(4):475-482
• Epilepsy Action: Keeping a seizure diary (updated December 2025), Diagnosis and Driving (updated November 2025)
• CDC: First aid for seizures (last updated 15 May 2024)