How to Keep a Seizure Diary That Your Neurologist Can Use
Seizures are hard to describe from memory, partly because awareness is often lost during them and partly because the appointment may be months later. Neurologists base diagnosis and treatment decisions largely on history: how often, how long, what they look like, what tends to come first. A seizure diary gives that history structure. It does not need to be elaborate. A rating, a few lines of notes after each event, and a daily record of sleep, medication and other likely triggers, kept consistently, are enough to show a pattern that months of recollection would blur.
What to record after each seizure
Log the date and start time, then the duration. If possible, time it on a phone rather than guessing, because a minute of seizure feels far longer to everyone watching. Describe what happened in plain words: staring, unresponsiveness, lip smacking or fumbling, stiffening, rhythmic jerking, which side of the body moved first, whether the eyes were open or closed, and whether you could hear people. Record any warning beforehand, such as a rising feeling in the stomach, a strange smell or taste, déjà vu or tingling. Then the aftermath: tongue bite, incontinence, injury, headache, sore muscles, confusion, and how long until you felt like yourself. Use a consistent severity scale, for example mild for a brief absence or focal event with awareness kept, moderate for lost awareness without convulsing, and severe for a convulsive seizure or one with injury, so months of entries stay comparable.
Triggers worth logging every day
Trigger patterns only show up if you also log the ordinary days. Each day, record sleep (short nights and disrupted sleep are among the strongest triggers), whether you took every medication dose on time, alcohol, stress, illness or fever, and missed meals. Note your period if you menstruate, because some people have catamenial epilepsy, with seizures clustering just before or during menstruation or around ovulation. Add screen time or flickering light only if you suspect photosensitivity, which affects a minority. For functional seizures, logging stress, conflict, pain, fatigue and situations that feel overwhelming can show what tends to come before an episode, which is exactly what treatment such as specialized therapy works with. After two or three months, compare the days before seizures with the rest. Repeated links, a missed evening dose, two short nights, are concrete things to discuss with your neurologist.
When a seizure needs emergency help
Call emergency services if a seizure lasts more than five minutes, if seizures follow one another without the person recovering in between, if breathing remains difficult or the person does not begin to wake up once the movements stop, if they are injured, if it happened in water, if they are pregnant or diabetic, or if it is the first seizure they have ever had. While waiting, stay with them, time it, move hard objects away, cushion the head, loosen anything tight around the neck and never put anything in the mouth. Once the jerking stops, roll them onto their side into the recovery position. If a rescue medication has been prescribed, use it exactly as the written care plan says. Outside emergencies, book a prompt review for any change in pattern: more frequent seizures, new types, longer recovery, seizures returning after a long gap, or new medication side effects.
How Trace Health helps you keep the diary
Logging takes one tap, so an entry can be made as soon as you are able, or by a partner or parent on your iPhone. Each entry carries a mild, moderate or severe rating and a note for the duration, the witness account and the recovery. Sleep, stress, alcohol, daily medications, missed meals and your period sit on the same timeline, where you can see which of them line up with your seizures. The doctor-ready PDF report brings the episodes, their notes and the activities you logged into a few pages for your neurologist, epilepsy nurse or FND team. Your data stays on your iPhone by default, with optional private iCloud sync, and no account is needed. Trace is a diary and not a seizure detection device, so it does not call for help or alert anyone during an event.
Frequently Asked Questions
Should someone else log my seizures for me?
Often that is the most accurate option. During many seizures awareness is reduced or lost, and memory of the event is patchy or absent afterwards, so a witness sees things you cannot report. If a partner, parent or friend is usually present, ask them to time the event, describe what they saw in a note, and, if you have agreed to it in advance, take a short video, which neurologists find extremely useful. Trace Health keeps the record on your own iPhone, so they can log it there for you, or you add it from their description afterwards. What matters most is that the details are written down the same day, before they fade.
Can a seizure diary show if my medication is working?
Yes, that is one of its main purposes. Neurologists judge an anti-seizure medication by comparing seizure frequency and severity before and after a change, usually over several months. Log every start, stop, dose change and missed dose, then compare the months before and after. Also record side effects such as drowsiness, dizziness, low mood, irritability or memory problems, because tolerability matters as much as control when choosing between treatments. Never stop or change an anti-seizure medication on your own: sudden withdrawal can trigger severe seizures. Bring the record to the appointment and decide changes together with your neurologist.
Are functional seizures worth tracking the same way?
Yes. Functional (dissociative) seizures are real, involuntary and common, and a diary helps in much the same way, by showing frequency, duration and what tends to come before them. The emphasis differs a little: the lead-up matters most, so note stress, conflict, pain, exhaustion, feeling overwhelmed or detached, and any early warning sensation, because these become the targets in therapy. Frequency tends to fall gradually with the right treatment, and a log shows progress that is easy to miss week to week. Anti-seizure drugs do not help functional seizures, so a clear diagnosis, often with video EEG, matters.
Your health data stays on your iPhone.
No account. Private. No personal information is ever requested. Your health data stays on your iPhone by default. A backup option to your private iCloud is available. Trace Health never collects or sells your health data.
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