Seizures more frequent or different than usual? How to record the course and prepare the appointment with your neurologist

Seizures that are more frequent or different than usual are a reason to talk to your neurologist soon. You can prepare by recording the course, on paper or in the seizure diary in Sam, which turns it into a doctor report as a PDF for the appointment. Then numbers lie on the table instead of impressions.

Why seizures become more frequent and what follows is not explained here. That is for your treatment team. This text describes the record you need for that conversation.

From "it is getting worse" to a timeline

"It is getting worse" and "I no longer have it under control" are feelings. Your doctor needs something to compare. That is a timeline with dated entries.

Which details go into each seizure is explained in newly diagnosed with epilepsy. When something changes, the comparison matters. Take two equal periods, for example the last twelve weeks and the twelve before. Count in both:

• how many seizures there were,
• which types appeared and whether a new one is there,
• how many were at night,
• how many had someone present,
• whether something ran differently, and put that in the note.

An invented example: from February to April the record shows six seizures, all in the day and all of the same type. From May to July it shows nine, three at night, and one type is new. Such a comparison fits on one page. What it means is judged by your treatment team, not by you and not by an app.

Epilepsy Action says a seizure diary helps you see progress or changes over time. You can share it with your GP, epilepsy specialist or epilepsy nurse to open the conversation about what happens next.

Day, night, unseen: what your record cannot show

A record holds only what you or others noticed. Ask people who were there, or who sleep in the same household, to write what they saw on the same day. Note in each entry whether someone was present.

That also holds for the night. Whether something happened at night only appears in the record if you notice it in the morning or someone tells you. How sleep from Apple Health can sit next to your entries is covered in sleep and epilepsy in Apple Health.

An empty record does not mean no seizures happened. That applies to paper and to Sam. Write gaps honestly, for example "night of the 3rd, unclear". For daily life and routines, see living with epilepsy: sleep, triggers and daily routines.

Seizures despite medicine: add the intake record

If you take medicine for epilepsy, its record belongs next to the seizure record. Then both timelines lie together on the table. On that basis your doctor can talk with you about the plan.

Record with dates what you took as planned, what happened differently and what you missed. In Sam you tick each dose as taken, adjusted or missed, and you can set reminders in the medication list. What changes on the plan is decided with your treatment team.

The NHS is clear that you should not change the dose or stop the medicine without talking to your specialist. If you have had a seizure after a long time without one, the NHS says to ask for an urgent GP appointment or get help from 111.

What the term drug-resistant epilepsy means

The term has a precise meaning. A task force of the International League Against Epilepsy (ILAE) proposed in 2010 that epilepsy counts as drug-resistant when seizures have not stopped after adequate trials of two tolerated, appropriately chosen and used seizure medicine schedules. Ongoing seizures do not always mean drug-resistant epilepsy. In a long-term study of 525 people, 63 percent became seizure-free on treatment (Kwan and Brodie, 2000).

The NHS notes that some people have seizures that are harder to control and need more support, and suggests raising ongoing seizures with your GP or specialist team. A specialist can review the diagnosis, the treatment plan and possible next steps. Whether the term applies to you is for your neurologist to say, not for this text.

Questions to bring to the appointment

Choose three questions and write them first. For this occasion these fit:

• What is different compared with before?
• Which details from my record matter most?
• What should I record until the next visit?
• When do we review the medicine plan again?
• Is an epilepsy specialist or a second opinion a topic for me?

Our doctor visit checklist has a general list as well.

First aid and when to call for help

This text gives no first-aid steps. For that, the NHS and Epilepsy Action have their own guides. In an emergency, the NHS says to call 999 when a seizure is the first, lasts longer than usual or more than 5 minutes, the person does not recover as usual, or there are 3 or more seizures in 24 hours. Use your local emergency number (112 in the EU, 999 in the UK, 911 in the US).

You do not have to judge whether things are worse. You record what happened, and your team reads it. For more on what the doctor wants to see, our seizure diary and the doctor conversation post goes deeper.

Track the course in Sam and take it as a PDF to your appointment

You bring your seizure course as a doctor report, with the recorded types, the night-time ones and the intakes, instead of impressions.

• Instead of a paper diary: you enter type, whether someone was there and a note in the epilepsy program in a few taps.
• Instead of memory: for entries made today, sleep, resting heart rate and heart rate variability come from Apple Health.
• Instead of notes for tablets: you tick each dose, and the intake record sits in the same PDF.

Only what you enter is in the diary. An empty diary does not mean no seizures happened. The program starts after a doctor has diagnosed epilepsy, and Sam is not meant for the moment of a seizure.

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

• Newly diagnosed with epilepsy: your first weeks
• Living with epilepsy: sleep, triggers and daily routines
• Sleep and epilepsy triggers in Apple Health
• Doctor visit checklist for a chronic condition

Sources

Updated: October 2026

• NHS: Epilepsy (last reviewed 6 March 2025)
• Epilepsy Action: Keeping a seizure diary (published July 2024, modified December 2025)
• Kwan P, et al: Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies (Epilepsia 2010)
• Kwan P, Brodie MJ: Early identification of refractory epilepsy (N Engl J Med 2000;342:314-319)
• Epilepsy Action: First aid for seizures