Seizure Diaries and Recording Seizures – Epilepsy: The Untold Side

Understanding epilepsy

A good seizure record is more than a date and time. It can help show patterns, improve diagnosis, measure treatment response, identify changes in seizure type and give clinicians details that may be impossible to recover later from memory alone.

Key point: the most useful record separates what happened before, during and after the event, and describes the sequence rather than trying to guess the seizure type.

Why seizure records matter

NICE recommends taking a detailed history after a first suspected seizure and, where possible, using eyewitness accounts and video footage to inform assessment. NICE’s evidence review found that witness descriptions and video are most useful when combined with specialist clinical assessment rather than used alone.

For people with established epilepsy, diaries can also help show whether seizures are becoming more frequent, whether a new seizure pattern has appeared, whether treatment is working and whether recovery is changing over time.

Do not try to diagnose the seizure in the diary

A diary is usually more useful when it describes what was actually seen rather than labelling an event as “focal”, “absence” or “tonic-clonic” unless that type has already been confirmed by the epilepsy team.

For example, “stared for about 20 seconds, did not answer, rubbed right fingers together, then looked confused for 2 minutes” contains more clinically useful information than “had a focal seizure”.

Record the seizure in chronological order

The ILAE 2025 seizure classification places greater emphasis on describing seizure manifestations in the order they occur. A seizure may evolve through several features, and that sequence can carry diagnostic and localising information.

A useful format is:

first sign → next change → main event → recovery

For example: unusual abdominal sensation → stops responding → left hand automatisms → head turns right → bilateral stiffening and jerking → confused and sleepy.

What to record before the event

If information is available, note:

date and exact or approximate time
whether the person was awake, asleep or just waking
what they were doing immediately beforehand
possible warning symptoms or aura
unusual sensations, smells, tastes, fear, déjà vu, rising abdominal feelings or visual changes
recent sleep loss or disrupted sleep
illness, fever or infection
missed, late or vomited medication
recent medication changes
alcohol or recreational drug exposure where relevant
menstrual-cycle timing where a pattern is suspected
other possible triggers or unusual circumstances

Do not force every event into a trigger explanation. Sometimes no trigger is identifiable.

What a witness should record during the event

Useful observations include:

the first thing that changed
whether the person stopped responding
whether they could follow simple commands
whether they appeared aware of what was happening
eye position or eye deviation
head turning
which side of the body moved first
stiffening, jerking or loss of muscle tone
rhythm and symmetry of movements
automatisms such as lip-smacking, picking, rubbing or chewing
speech arrest, unusual speech or inability to understand
changes in colour, sweating, breathing or drooling
vocalisations or unusual sounds
wandering or apparently purposeful automatic behaviour
falls or injury
urinary or bowel incontinence
tongue or mouth injury
how long the observable seizure lasted

Responsiveness and consciousness are not the same thing

The 2025 ILAE classification uses consciousness as a classifier in focal seizures, operationally informed by awareness and responsiveness. A person may be unable to respond normally yet later remember part of the event, or may move and speak while not being fully conscious of what is happening.

Witnesses should therefore describe what they tested and observed — for example, “did not answer name” or “followed command to squeeze hand” — rather than simply writing “unconscious” when they are unsure.

Timing: what exactly should be timed?

Record when the seizure appears to start and when the active seizure manifestations stop. If the event evolves, note approximate timings for important changes where practical.

Recovery should be recorded separately. The end of jerking is not necessarily the end of the episode experienced by the person.

Useful separate fields are:

seizure duration
time until responsive
time until orientated
time until usual baseline

Read more: Postictal Recovery →

What to record after the seizure

Postictal information can be just as useful as what happened during the visible event. Note:

confusion or disorientation
sleepiness or need to sleep
headache
muscle pain
weakness
speech or word-finding difficulty
memory gaps
fear, agitation or unusual behaviour
wandering
nausea or vomiting
injury or pain
how long it took to return to normal baseline

A marked change in recovery pattern can be clinically important even when the visible seizure looks similar to previous ones.

Record rescue medication separately

If prescribed rescue medication is used, record:

which medicine was given
the dose
the exact time
who administered it
whether the seizure stopped afterwards
whether a second dose was given according to the plan
whether emergency services were called

This information can help the epilepsy team assess whether the emergency plan is working as intended.

Clusters need to be recorded as a pattern, not only as separate seizures

If several seizures occur close together, record both the individual events and the overall cluster.

Useful details include:

number of seizures
time between them
whether the person recovered fully between events
whether seizure type changed within the cluster
whether rescue medication was needed
whether the pattern matched the person’s usual cluster pattern

Video can be extremely useful — but safety comes first

Home video can provide information that is difficult to capture in words. ILAE educational material specifically recognises extracting seizure semiology from video recordings as an important clinical skill, and NICE recommends using video footage where possible during assessment.

If recording is safe:

start far enough back to show the whole body where possible
include the face and eyes if this can be done without interfering with first aid
keep the camera steady
say the time aloud if helpful
show which limb moved first if this is visible
briefly test responsiveness using a simple question or command if safe
continue long enough to capture early recovery when appropriate

Do not delay first aid, airway protection, rescue medication or emergency help in order to film.

Respect privacy and dignity when filming

Seizure videos can contain highly sensitive material, including loss of consciousness, incontinence, undressing, confusion or distress. They should be stored securely and shared only with people who genuinely need them.

Where the person can give consent, their wishes about recording and sharing should be respected. For people who cannot consent during the event, decisions should focus on clinical usefulness, dignity, safeguarding and secure handling.

Security-camera footage can also help

A seizure may be captured by a home or workplace camera without anyone witnessing it directly. ILAE has highlighted cases where home or security video changed the diagnostic impression after history alone was misleading.

If footage may be clinically useful, preserve the original clip before automatic deletion or overwriting and note the date and time.

Use witness descriptions while memory is fresh

Witnesses should write notes soon after the event if possible. Human memory changes quickly, especially after a frightening incident, and later retelling can unintentionally add assumptions.

It is useful to distinguish:

what was directly seen
what the person reported afterwards
what the witness thinks it might mean

Record medication and treatment changes

A seizure diary becomes much more useful when treatment changes are marked clearly. Record:

medicine name
dose
date the dose changed
missed doses
side effects
new medicines for other conditions
when rescue medication was prescribed or changed

This can help show whether seizure frequency, severity or recovery changed after a treatment adjustment.

Track side effects as well as seizures

A medicine can reduce seizures while worsening fatigue, dizziness, mood, cognition or balance. A diary that records only seizure count can miss that trade-off.

Useful side-effect notes may include:

sleepiness
dizziness
balance problems
memory or concentration change
mood change
rash
appetite or weight change
sleep disturbance

Menstrual-cycle tracking can reveal patterns

Some people notice seizure clustering at particular points in the menstrual cycle. When this is suspected, recording period dates alongside seizures can help establish whether a repeatable pattern exists.

One or two coincidences are not enough to prove a hormonal relationship; patterns usually need repeated observation across cycles.

Sleep tracking can also be useful

If sleep seems relevant, record bedtime, wake time, night awakenings, sleep deprivation, nocturnal events and whether seizures happen during sleep or shortly after waking.

This can help distinguish an impression such as “poor sleep causes every seizure” from a pattern that is actually supported by repeated records.

Read more: Sleep & Epilepsy →

Do not over-interpret triggers

Stress, poor sleep, illness, alcohol and missed medication can increase seizure likelihood in some people, but diary entries can create false patterns if every event is linked retrospectively to something that happened beforehand.

A useful diary records possible factors without assuming causation. Repeated patterns over time are more informative than one-off associations.

When a diary can reveal that the seizure pattern has changed

Seek clinical review if records show:

a new seizure type
increasing seizure frequency
longer seizures
more clusters
loss of a previous warning
new falls or injuries
new night-time seizures
longer or more severe postictal recovery
repeated rescue-medication use
new breathing concerns

A changed pattern can alter diagnosis, safety planning, treatment and driving status.

A diary can help before diagnosis too

People do not need a confirmed epilepsy diagnosis before keeping a record. NICE recommends detailed history, eyewitness information and video after a first suspected seizure, and its blackout guidance specifically advises trying to record future events when the diagnosis remains unclear.

Repeated stereotyped episodes documented carefully can provide useful evidence for specialist assessment.

Paper, phone app or spreadsheet?

The best format is the one that will actually be used consistently. Options include:

paper diary
calendar
notes app
spreadsheet
specialist seizure-tracking app

A highly detailed app is not automatically better than a simple diary if it becomes too burdensome to maintain.

What to bring to an epilepsy appointment

A useful appointment summary can include:

number of seizures since the last review
dates of the most significant events
any new seizure pattern
longest seizure
clusters
injuries
rescue-medication use
important videos
medication changes and side effects
questions about treatment or safety

This can be easier for clinicians to use than scrolling through months of unstructured notes during the appointment.

Do not let perfect recording become another burden

Some people have frequent seizures, memory difficulties, fatigue or carers who cannot document every event in detail. A diary does not have to be perfect to be useful.

When recording everything is unrealistic, prioritise major seizures, changes from the usual pattern, injuries, clusters, rescue-medication use and events that are likely to affect treatment decisions.

The central point

A seizure diary should capture the story of the event, not just count it. The sequence before, during and after a seizure can help distinguish seizure types, identify changes, measure treatment response and give the epilepsy team information that the person may not be able to remember themselves.

Good records turn fragments of memory into a clinical timeline.

Where next?

Diagnosis and Tests →
Seizure Types →
Auras and Focal Seizures →
Postictal Recovery →
Back to Understanding Epilepsy →

Sources

The Untold Side Companion App

The free Companion App is designed for quick seizure recording when detailed note-taking is not practical. A seizure can be saved with one tap and the details filled in later, including recovery updates, witness information, medication records and notes.

Open the Companion App information and instructions →

Medical note: A diary or home video can support clinical assessment but cannot diagnose epilepsy on its own. Emergency care should never be delayed in order to record an event.