Seizure Diaries and Videos
How to record useful evidence without turning every unusual feeling into a seizure
Doctors rarely see a person's ordinary seizures themselves.
Appointments usually happen:
days or weeks later
when the seizure has already finished
after memory of the event has faded
and sometimes without the person who witnessed it.
A seizure diary and, when it can be obtained safely, a video of a typical event can provide extremely useful evidence.
NICE specifically recommends using eyewitness accounts and video footage where possible when assessing a first suspected seizure.
Epilepsy Action also recommends keeping a diary containing information such as:
seizure date and time
seizure type
duration
possible triggers
symptoms before the seizure
recovery afterwards
medication changes
side effects
and video evidence where available.
But a diary has limitations.
It records what somebody noticed.
That is not necessarily identical to every seizure that actually occurred.
Why seizure records matter
A useful seizure record can help answer several different questions.
For someone awaiting diagnosis:
Are these events likely to be epileptic seizures?
For someone with established epilepsy:
Has seizure frequency changed?
For treatment review:
Did seizures improve after the medication changed?
For someone experiencing several kinds of episodes:
Are these genuinely different event types?
For surgery assessment:
What happens first during the seizure?
For nocturnal epilepsy:
Are events occurring that the person does not remember?
A diary therefore provides much more than a monthly seizure total.
A seizure diary is not just a calendar
Writing:
“Tuesday — seizure.”
is better than recording nothing.
But it provides very little information.
A more useful entry could say:
14 September, 21:16 — Type B event. Sudden rising stomach sensation followed by staring and repetitive rubbing of right hand. Did not answer normally for approximately 70 seconds. Confused for around 15 minutes afterwards. No tonic-clonic activity. Evening medication taken normally. Slept approximately 5 hours previous night.
That provides information about:
timing
possible focal symptoms
consciousness
movement
duration
recovery
medication
and sleep.
First: separate different event types
One of the most useful improvements to a seizure diary is to stop recording every event simply as:
“seizure.”
If someone has several recognisably different events, give them temporary labels.
For example:
Type A
Sudden déjà vu and nausea, remains responsive, lasts around 20 seconds.
Type B
Stops responding, stares and makes repetitive hand movements for one to two minutes.
Type C
Falls, stiffens and develops bilateral rhythmic jerking.
Type D
Night-time event noticed because of repeated twitching.
The names do not need to be medically correct.
The purpose is to show the clinician that different things are happening.
The specialist can later determine whether they represent:
stages of the same seizure
different epileptic seizure types
epileptic and non-epileptic events
or something else entirely.
Do not diagnose the event yourself
If the diagnosis is uncertain, it is perfectly acceptable to write:
“Possible Type A event”
or:
“Uncertain episode.”
A diary should record observations rather than force every unusual sensation into an epilepsy label.
For example:
“Felt dizzy for three minutes while standing in a hot room; remained fully responsive.”
is more useful than automatically writing:
“Focal seizure.”
The specialist needs the raw information.
Record the date
The date seems obvious, but it matters when doctors compare events with:
medication changes
menstrual cycles
illness
sleep patterns
hospital admissions
blood levels
or investigations.
If several events occur on the same day, record each one separately where possible.
Record the time
Time of day can reveal patterns.
For example, seizures might occur predominantly:
shortly after waking
during sleep
in the evening
around medication dosing
or at no consistent time.
Write the actual time where possible rather than simply:
morning
or:
night.
If the time is uncertain, say so.
For example:
“Found evidence of possible night-time event on waking; exact time unknown.”
That is more accurate than inventing one.
Record whether the person was awake or asleep
This is particularly important.
Write whether the event happened:
while fully awake
while falling asleep
during sleep
shortly after waking
or when the sleep/wake state is uncertain.
Epilepsy Action specifically recommends recording whether a seizure occurred during sleep where this can be established.
Nocturnal seizure counts are particularly vulnerable to underestimation because both the person and anyone nearby may be asleep.
Record what happened immediately beforehand
Useful information might include:
sleeping
waking
sitting quietly
standing
exercising
eating
bathing
watching television
using a computer
being ill
feeling faint
experiencing pain
emotional stress
or having just taken medication.
This does not mean whatever happened beforehand was necessarily a trigger.
It is simply information.
Repeated patterns are more convincing than one isolated coincidence.
Related Information Hub page:
Seizure Triggers vs Seizure Causes — What's the Difference?
Record the very first symptom
For seizure classification, the first thing that happens can be particularly valuable.
Examples include:
sudden fear
déjà vu
unusual smell
rising abdominal sensation
one hand jerking
head turning
brief speech difficulty
visual change
sudden staring
or immediate loss of consciousness.
Later seizure activity may spread widely through the brain.
The first symptom can sometimes provide information about where the event began.
Auras should be recorded
If a familiar aura is believed to be an epileptic focal seizure, it should be recorded even when nothing larger follows.
For example:
17 September — familiar 15-second déjà vu/rising stomach event. Fully responsive. Did not progress.
Do not record only the tonic-clonic seizures while ignoring repeated focal seizures.
That can make treatment appear more successful than it actually is.
Related Information Hub page:
Auras and Epilepsy: The Seizure Before the Seizure?
Record consciousness and responsiveness carefully
Avoid simply choosing between:
conscious
and
unconscious.
Reality can be much more complicated.
Record what was actually observed.
For example:
“Eyes open but did not answer name.”
“Answered questions but responses were unrelated.”
“Could follow instruction to sit down but later remembered none of it.”
“Fully aware and remembers entire event.”
The current ILAE seizure classification distinguishes consciousness using both awareness and responsiveness.
The detailed observation is therefore much more useful than saying someone looked “out of it”.
Record movements precisely
Instead of:
“Shaking.”
try to describe:
which body part moved first
whether movement was on one side or both
whether it was stiffening or jerking
whether movements were rhythmic
whether the head turned
whether the eyes moved
whether the movements spread
whether the person fell.
For example:
“Right arm became stiff first, then head turned right, followed by bilateral stiffening and jerking.”
That can contain considerably more diagnostic information than:
“Had a fit.”
Record automatisms
Automatisms are involuntary but relatively organised behaviours that can occur during seizures.
Examples can include:
lip smacking
chewing
rubbing fingers together
picking at clothes
repeatedly handling objects
wandering
or apparently purposeful movements.
If these occur, describe them rather than simply saying:
“Acted strangely.”
Record speech and language
Useful observations include whether the person:
stopped speaking
made sounds
used incorrect words
could understand speech
could answer appropriately
repeated phrases
spoke normally
or was unable to remember conversation afterwards.
Speech changes may provide useful information about seizure networks.
Record breathing if something clearly changes
A witness may notice:
noisy breathing
unusually slow breathing
temporary apparent pauses
gasping
snoring-type sounds
or colour change.
Describe what was actually seen.
Avoid trying to medically interpret it in the diary unless a professional has already explained the pattern.
For example:
“Breathing became noisy and irregular after jerking stopped.”
is preferable to:
“Stopped breathing for two minutes”
unless this was objectively established.
If breathing is dangerously abnormal, emergency care takes priority over recording observations.
Record injuries
Epilepsy Action recommends recording injuries associated with seizures.
Useful details might include:
head strike
cut
burn
bruising
suspected fracture
tongue injury
shoulder injury
or other trauma.
This helps clinicians understand the practical consequences of seizures, not merely how often they occur.
Record seizure duration
Timing seizures is useful.
Whenever possible, record:
when the event began
and:
when the active seizure ended.
Do not estimate from how long it felt.
Events that seem extremely long during an emergency are often difficult to judge accurately.
Using a clock or phone timer gives much better information.
Separate seizure duration from recovery time
These are not the same thing.
For example:
Active seizure: 90 seconds
Confused afterwards: 25 minutes
Slept for: 2 hours
A diary entry saying:
“Seizure lasted three hours”
could be interpreted very differently if the actual seizure lasted two minutes and the remainder was postictal sleep.
Record them separately.
Record the postictal period
Epilepsy Action recommends recording how the person feels after seizures and how long recovery takes.
Possible postictal symptoms include:
confusion
memory loss
sleepiness
headache
weakness
speech problems
nausea
emotional changes
agitation
muscle pain
or exhaustion.
Write approximately how long each lasted if known.
Recovery can be part of the seizure pattern
Some people's postictal state is highly consistent.
For example:
seizure → 20 minutes confusion → several hours sleep
might happen repeatedly.
That pattern can help clinicians distinguish different event types and understand the person's total seizure burden.
The postictal period should not be treated as medically irrelevant just because the electrical seizure has stopped.
Record rescue medication
If emergency or rescue medication is used, record:
which medicine
dose
time given
reason it was given
whether another dose was required
and what happened afterwards.
Epilepsy Action also recommends bringing details of rescue medication use to appointments.
Record ordinary epilepsy medication
A diary can also record:
whether routine doses were taken
missed doses
dose changes
new medicines
medicines being withdrawn
and significant side effects.
Epilepsy Action specifically recommends recording epilepsy medicines, other medicines, possible side effects and the effects of medication changes.
Do not deliberately miss medication to test whether seizures occur.
Menstrual-cycle information can be useful
For people who suspect a menstrual relationship, recording:
first day of menstruation
seizure dates
cycle length
and relevant hormonal treatment
over several cycles can be much more useful than remembering afterwards that seizures “seem worse around periods”.
Epilepsy Action includes menstrual-cycle information among the data that can be recorded in a seizure diary.
Related Information Hub pages:
Menstruation and Epilepsy
Catamenial Epilepsy
Record sleep without becoming obsessive
If sleep appears relevant, simple information is enough.
For example:
Bed 01:30 — woke 06:00 — approximately 4.5 hours
or:
Awake repeatedly overnight.
There is rarely a need to record every minute of sleep indefinitely unless a specialist specifically asks for detailed sleep information.
The purpose is to identify useful patterns, not create another source of stress.
Record illness
Relevant information can include:
fever
infection
vomiting
diarrhoea
dehydration
hospital admission
or another significant illness.
Vomiting can be particularly relevant if it occurs soon after antiseizure medication because absorption may be affected.
Record alcohol or other relevant substances honestly
Accurate information helps doctors interpret seizure patterns.
If a seizure followed:
heavy alcohol use
withdrawal
recreational drugs
or another substance,
recording that does not mean the clinician will automatically conclude it caused the event.
It gives them the information needed to distinguish:
ordinary breakthrough seizure
possible trigger
interaction
or acute symptomatic seizure.
One diary entry template
A simple structure is:
Date:
Time:
Event type:
Awake/asleep:
First symptom:
What happened next:
Responsiveness/consciousness:
Movement:
Duration:
Recovery:
Injury:
Rescue medication:
Routine medication taken normally?:
Possible relevant factors:
Video available?:
Anything different from usual?:
That is enough for most situations.
Do not make the diary so complicated that nobody uses it
The best seizure diary is usually the one that can actually be maintained.
Possible formats include:
paper diary
notebook
calendar
spreadsheet
phone notes
epilepsy app
or a dedicated online seizure tracker.
Epilepsy Action says there are numerous paper, online and app-based options and recommends choosing something practical enough to use regularly.
Paper or app?
Neither format is automatically superior for everyone.
A 2024 study in an epilepsy monitoring unit compared app and paper seizure reporting with video EEG. App users showed higher reporting precision than paper users in that particular cohort, although the study was relatively small and involved adults with focal epilepsy undergoing specialist monitoring.
That does not prove everybody should use an app.
Someone who reliably completes a paper diary has a better record than someone who downloads a sophisticated app and stops using it after three days.
Apps are tools, not diagnostic devices
An epilepsy diary app may allow someone to:
record seizures
time events
log medication
attach video
create reports
or share information with clinicians.
But the existence of an app does not mean it has been medically validated to diagnose seizures.
Epilepsy Action's current technology guide lists available tools but explicitly states that inclusion is not clinical endorsement.
Why seizure diaries are imperfect
A diary is usually treated as if seizure frequency were simple:
number of diary entries = number of seizures.
Research shows that this can be wrong.
People can:
miss genuine seizures
forget them
sleep through them
have impaired consciousness
mistake other symptoms for seizures
or group several seizures together.
This means both under-reporting and over-reporting can occur.
Some seizures are never noticed
A large 2024 study analysed 3,407 people undergoing ambulatory video EEG.
Researchers found that 64% of epileptic seizures identified during review of the recordings had not been reported by the patient.
This was a selected population undergoing diagnostic ambulatory monitoring, so the percentage should not be applied to everybody with epilepsy.
But it demonstrates an important principle:
a diary may underestimate seizure burden.
Even tonic-clonic seizures can sometimes be missed
It seems surprising because tonic-clonic seizures are usually considered extremely obvious.
But a 2026 study examined 130 people with epilepsy who had tonic-clonic seizures objectively captured during prolonged ambulatory video EEG.
Among that selected group:
61 of 130 people had at least one unreported tonic-clonic seizure;
and 340 of 754 recorded tonic-clonic seizures — 45.1% — were unreported.
Seizures during sleep were more likely to be missed.
This does not mean 45% of all tonic-clonic seizures everywhere go unnoticed.
The study population was specifically selected because tonic-clonic seizures were captured during ambulatory monitoring.
But it shows why night-time seizure histories can be incomplete.
Why might someone not know they had a seizure?
Possible explanations include:
the seizure occurred during sleep
consciousness was impaired
memory formation was disrupted
postictal amnesia occurred
the seizure was extremely brief
symptoms were subtle
or the person interpreted the event as something else.
This is not poor diary keeping.
Sometimes the seizure itself removes the person's ability to record it accurately.
Over-reporting can happen too
People can also record events they reasonably believe were seizures that later turn out not to be epileptic.
A 2024 ambulatory video-EEG study found substantial discrepancies in both directions between patient reports and objectively reviewed recordings.
And a study involving adults with absence epilepsy found that many patient-reported “absence seizures” had no corresponding epileptic EEG activity during monitoring.
This does not mean patients are exaggerating.
Many neurological sensations are extremely difficult to distinguish without simultaneous EEG.
A diary is still valuable
The limitations do not make seizure diaries pointless.
They remain extremely useful for tracking:
recognised seizures
timing
event type
treatment changes
recovery
injuries
menstrual patterns
and possible triggers.
The correct interpretation is:
a seizure diary is a record of observed or recognised events — not necessarily a perfect measurement of every seizure occurring in the brain.
Why video can add something a diary cannot
A written description relies on:
memory
language
interpretation
and what the witness thought was important.
A video preserves the actual event.
It may allow a specialist to examine:
the sequence of movements
responsiveness
eye and head position
automatisms
breathing
vocalisation
duration
and recovery.
NICE specifically recommends using seizure video footage where possible during assessment.
Smartphone video can genuinely help diagnosis
A 2025 systematic review and meta-analysis examined smartphone-based approaches to seizure diagnosis.
For smartphone seizure videos, the pooled analysis found a sensitivity of 77% and specificity of 91% for identifying epileptic seizures, although studies varied and video should remain an adjunct to clinical assessment rather than a standalone diagnostic test.
Earlier prospective specialist studies also found that expert review of good-quality smartphone videos could significantly improve diagnostic accuracy when combined with the clinical history.
So a useful phone video can be much more than a personal record.
But it is not a replacement for video EEG where diagnostic uncertainty remains.
Safety comes before filming
This rule overrides everything else.
Epilepsy Action advises witnesses to make the person safe before beginning to film.
If someone is:
close to traffic
in water
near fire
falling from height
injured
struggling to breathe
or requires emergency seizure first aid,
deal with that first.
A neurologist would rather receive no video than receive an excellent recording obtained while somebody remained in danger.
Do not sacrifice first aid for a better video
Filming should never replace:
protecting the person from immediate hazards
timing the seizure
appropriate recovery positioning
rescue medication when prescribed
or calling 999 when necessary.
If only one person is present, their priority may need to be the person's safety rather than the phone.
Related Information Hub page:
Seizure First Aid
If filming is safe, try to capture the beginning
The earliest part of a seizure can contain some of the most useful classification information.
For example, the beginning may show:
one-sided movement
head turning
initial staring
an automatism
speech stopping
or a focal behaviour
before the event develops into bilateral convulsions.
If filming begins only after the person has already been convulsing for a minute, that early information is lost.
Of course, nobody should delay safety measures just to capture the beginning.
Keep enough of the person in view
A video containing only:
one hand
one foot
or an extreme close-up of the face
may hide important information.
Research into smartphone seizure-video quality found that restricted fields of view can reduce diagnostic usefulness.
Where safely possible, include enough of the person to show:
head
face
arms
trunk
and legs.
If the whole body cannot be captured, keep the most relevant visible movement in frame without abandoning safety.
Do not continually zoom in and out
Stable footage is usually easier to interpret than dramatic camera movement.
Try to avoid:
rapid zooming
swinging the phone around
filming the floor
or repeatedly changing orientation.
The aim is clinical information, not cinematic footage.
Good lighting helps
Very dark footage can hide:
eye position
skin colour
subtle movements
and facial behaviour.
Research on smartphone seizure-video quality found that technical factors including field of view and audio influenced usefulness.
Do not create bright flashing illumination or do anything likely to disturb the person.
Simply use the available ordinary light where safe.
Audio can be useful
Do not automatically mute seizure videos.
Audio may capture:
vocalisation
breathing
speech
witness interaction
timing information
or sounds associated with movement.
The smartphone-video quality study found good audio was associated with diagnostically useful recordings.
Keep the camera running long enough to show what happens
Extremely short clips can miss the important sequence.
Where safe, a recording may be more informative if it includes:
early event
main seizure behaviour
and some early recovery.
Research has identified very short recordings as one factor that can limit interpretation.
But again, filming stops being important the moment medical care or immediate safety requires attention.
Recovery footage can occasionally matter
The postictal period may contain useful information.
For example, it may show:
prolonged confusion
speech difficulty
temporary weakness
inability to recognise surroundings
agitation
or rapid return to normal.
A video showing only the movement phase may therefore omit useful evidence.
But privacy and dignity remain important.
There is no need to continue filming simply for the sake of creating a long recording once useful clinical information has been captured.
Record the time separately
Epilepsy Action recommends noting when the seizure starts if someone is being filmed.
If possible, say aloud or write down:
“Started 19:42.”
This can be more reliable than trying to estimate duration afterwards from memory.
The video's own timestamp can also help, although the exact clinical start of the seizure may precede filming.
Natural interaction can provide useful information
If the person is safe, ordinary interaction captured on the video can sometimes show whether they:
respond to their name
understand speech
speak normally
appear confused
or remember what is happening.
Research has found that limited interaction can reduce some videos' diagnostic usefulness.
However, witnesses should not aggressively test, restrain, shake or provoke the person.
Normal calm communication is enough.
Do not deliberately provoke another seizure for the camera
Never deliberately:
withhold medication
deprive someone of sleep
expose them to flashing lights
provide alcohol or drugs
or recreate a suspected trigger
to obtain a video.
Diagnostic seizure provocation, when appropriate at all, belongs in specialist clinical monitoring.
Do not put anything in the person's mouth
Filming does not change seizure first aid.
Do not:
put fingers in the mouth
insert an object
try to hold the tongue
or give food, drink or tablets during impaired consciousness.
The video should record the event, not create additional risk.
Do not restrain the movements for filming
Do not try to hold someone's arms or legs still so the camera can “see better”.
Unnecessary restraint can:
cause injury
increase distress
and obscure the natural seizure behaviour that clinicians need to see.
Make sure the video is of the event you actually want assessed
This sounds obvious, but it can be surprisingly important.
A video may accidentally record:
only the postictal behaviour
only recovery
a different event type
or a reaction occurring after the seizure.
A published case report showed how a smartphone video of unusual postictal behaviour could initially appear misleading when interpreted without understanding what had happened before filming began.
When showing a clinician a video, explain:
“The seizure itself began approximately two minutes before this recording.”
if that is what happened.
Context matters.
A video cannot always distinguish epilepsy from functional seizures
Smartphone video can be very useful in this area, particularly when reviewed by experienced clinicians.
But the gold-standard investigation for difficult cases may still be video EEG of the person's typical event, because it allows clinicians to compare behaviour directly with brain electrical activity. Epilepsy Action describes video EEG as the most reliable investigation for functional seizures.
A phone video should therefore be treated as:
valuable evidence
rather than:
absolute proof.
AI should not be used to diagnose a seizure video
Sending a seizure video to an artificial-intelligence system is not equivalent to specialist clinical interpretation.
A 2026 study testing several multimodal AI models on seizure videos found only modest diagnostic performance even with newer models, despite high confidence scores.
Seizure videos should be assessed in context by appropriately trained healthcare professionals.
Privacy matters
A seizure recording contains sensitive medical information.
Before sharing it beyond healthcare, consider:
whether the person has consented
whether their face is visible
whether intimate or vulnerable moments are shown
whether other people are identifiable
where the file will be stored
and who can access it.
A clinically useful video does not need to be posted publicly on social media.
It can simply be shown securely to the person's healthcare team.
Children deserve the same dignity
Parents and carers may need to record a child's events for diagnosis.
But the recording remains sensitive medical information.
Try to avoid unnecessary exposure of:
undressed areas
toileting
bathing
or other private situations.
The diagnostic purpose should guide what is recorded and how it is stored.
Cameras can help with nocturnal events
Home cameras or monitors may sometimes reveal:
movement during sleep
falls
unusual behaviour
or events the person does not remember.
Epilepsy Action's current technology guidance notes that video monitors can be useful for reviewing events later and sharing recordings with healthcare professionals, particularly for seizures occurring during sleep.
But cameras do not detect every seizure.
A home camera is not an EEG
A video can show movement and behaviour.
It cannot directly show whether electrical seizure activity is occurring in the brain.
A person may have:
subtle focal seizure activity
brief impaired-consciousness seizures
or electrographic seizures
with little visible movement.
Conversely, normal sleep movements may look concerning on camera.
Video findings sometimes need correlation with EEG.
Movement alarms also have limitations
Bed monitors and wearable devices may detect certain forms of:
repetitive movement
sound
or falls.
They are much less reliable for seizures that involve:
staring
subtle automatisms
sensory symptoms
or little movement.
Epilepsy Action's technology information makes clear that different monitoring devices detect different phenomena and that they should not be assumed to capture every seizure type.
A future Information Hub page will examine this separately.
Planned related page:
Seizure Detection Devices, Alarms and Wearables
Do not turn the bedroom into a laboratory unless there is a reason
Monitoring can be helpful.
It can also create:
anxiety
sleep disruption
constant checking
and loss of privacy.
More technology is not automatically safer or more informative.
The question should be:
“What specific problem are we trying to solve?”
For example:
detecting tonic-clonic seizures at night
identifying unexplained injuries
documenting unusual sleep events
or providing evidence for the epilepsy team.
How should multiple seizures in a cluster be recorded?
If clearly separate seizures occur, record them individually where possible.
For example:
20:12 — focal impaired-consciousness seizure, 55 sec
20:27 — similar event, 48 sec
20:51 — similar event, 61 sec
rather than simply:
“Had seizures for 40 minutes.”
If seizures are so close together that the person does not recover, this may represent an emergency and the care plan takes priority over diary precision.
What if you do not know whether there was recovery?
Write exactly that.
For example:
“Three episodes observed between 20:10 and 20:45. Unsure whether fully recovered between them.”
Uncertainty is useful information.
You do not need to create a definite answer where none exists.
What if a seizure happened while alone?
Record:
the last thing remembered
the first thing remembered afterwards
possible injuries
disturbed surroundings
time gap
unusual exhaustion
tongue injury
incontinence
and any available device or camera evidence.
But do not automatically conclude a seizure occurred solely because one clue was present.
For example, waking tired is common and not specific to epilepsy.
“Missing time” should be recorded descriptively
Instead of:
“Had seizure at 14:00”
when nobody saw one, consider:
“Remembered starting lunch at approximately 13:50. Next clear memory 14:20. Found cup on floor. No witness. Possible event.”
That tells the neurologist what is known and what has been inferred.
Witness entries can be extremely useful
Someone who regularly sees the seizures can sometimes contribute information the person cannot.
A witness diary might record:
first visible sign
responsiveness
movement
duration
breathing
recovery
and whether the event differed from usual.
If possible, use the witness's actual observations rather than interpretations.
“Left arm stiffened”
is better than:
“Seizure came from the right side of the brain.”
The latter is a medical conclusion.
Separate witnessed seizures from suspected seizures
A diary might use simple categories:
Confirmed/witnessed typical event
Possible event
Aura only
Night-time suspected event
Uncertain symptom
This prevents all entries being treated as equally certain.
Do not delete an entry because it later appears not to have been a seizure
If an event is later reclassified, update it.
For example:
“Originally recorded as Type C seizure — later video-EEG review suggested non-epileptic event.”
That preserves the history and prevents distorted comparisons with older records.
Seizure counts matter when judging treatment
Suppose a person reports:
Before medicine change: 12 seizures per month
After medicine change: 4 seizures per month
That may represent meaningful improvement.
But it is important to establish whether:
the same seizure types are being counted
aura-only events were included consistently
sleep seizures were recognised differently
and monitoring methods changed.
Otherwise, apparent improvement or worsening may partly reflect different counting.
Better monitoring can make epilepsy appear worse
Imagine somebody begins using a night camera and suddenly records six seizures per month rather than two.
That does not necessarily mean their epilepsy has suddenly tripled in severity.
It may mean:
four seizures were happening previously but were not being detected.
The 2026 ambulatory video-EEG study showing substantial under-reporting of tonic-clonic seizures, especially during sleep, illustrates why this can happen.
Likewise, improved diagnosis can reduce the apparent seizure count
Suppose someone previously recorded every:
dizzy spell
panic episode
twitch
and blank moment
as an epileptic seizure.
After video EEG, clinicians may determine that only one particular event type is epileptic.
The recorded epileptic seizure frequency may then decrease even though the person's symptoms have not magically disappeared.
The events have simply been classified more accurately.
A diary should not become an examination
The purpose is to help healthcare.
It should not create a situation where someone feels they have failed because they:
forgot an entry
could not remember an event
did not know the exact time
or could not identify a trigger.
Write:
unknown
when something is unknown.
That is accurate data.
What to take to an epilepsy appointment
A useful appointment package might include:
seizure diary
one or two representative videos of each event type
current medication list
previous medication history
rescue-medication record
list of major changes since the previous appointment
and a short list of questions.
Epilepsy Action specifically recommends bringing seizure diaries, seizure videos and medication information to epilepsy appointments.
You usually do not need to show the neurologist hundreds of videos
If seizures are repetitive and virtually identical, select:
one clear example
perhaps one unusual example
and any event type that appears different.
Keep the rest available if needed.
Tell the clinician:
“I have 27 recordings of this same type if you need more.”
That is usually more practical than trying to play every event during a short appointment.
Label video files
Instead of:
VID_20260917_203455.mp4
consider storing it as something like:
17-Sep-2026_Type-B_20-34.mp4
or keeping a corresponding diary reference.
That makes it far easier to match:
video
diary entry
medication
and later clinical interpretation.
Keep the original if possible
Repeatedly editing a video can remove:
timing
context
audio
or the beginning and end.
If you create a shorter clip for convenience, consider keeping the original file as well.
Clinicians may occasionally want to see something outside the edited section.
A seizure diary is evidence, not proof
A diary can strongly support clinical assessment.
A video can strongly support clinical assessment.
Neither should be interpreted alone.
The most reliable diagnosis may require combining:
history
witness report
diary
smartphone video
EEG
video telemetry
MRI
and other investigations.
The diagnostic value comes from the pieces agreeing with one another.
Questions to ask your epilepsy team
Useful questions include:
Which events should I count as seizures?
Should I record my aura-only events?
Do you want every event recorded or only certain seizure types?
What details matter most in my diary?
Would a phone video help?
Which part of the seizure would be most useful to capture?
Could some of my diary entries represent something other than epilepsy?
Do you think I am missing seizures during sleep?
Would ambulatory EEG or video telemetry help establish my true seizure burden?
Would a seizure-monitoring device be useful for my seizure type?
How should I record clusters?
What counts as seizure freedom in my case?
A practical diary example
Event 1
Date: 18 September 2026
Time: 18:42
Event type: A — familiar focal event
State: Awake
First symptom: Sudden déjà vu and rising stomach sensation
Responsiveness: Normal
Movement: None noticed
Duration: Approximately 20 seconds
Recovery: Immediate
Injury: None
Medication: Taken normally
Possible relevant factors: Poor sleep previous night
Video: No
Notes: Identical to previous Type A events
Event 2
Date: 18 September 2026
Time: 22:17
Event type: B
State: Awake
First sign witnessed: Stopped talking
Responsiveness: Did not answer name normally
Movement: Repeated rubbing of right hand
Duration: 75 seconds
Recovery: Confused for approximately 12 minutes
Injury: None
Medication: Taken normally
Video: Yes
Notes: Witnessed by family member
That gives the epilepsy team considerably more information than:
“Two seizures Thursday.”
A practical nocturnal entry
Date: 19 September 2026
Time: Unknown — overnight
Event type: Possible nocturnal event
State: Asleep
Evidence: Camera recorded approximately 35 seconds of repeated movement at 03:14
Memory: None
Morning symptoms: More tired than usual
Injury: None identified
Medication: Taken normally
Video: Available
Notes: Uncertain whether epileptic — added for specialist review
Notice that the entry does not claim:
“Definite sleep seizure.”
It records the evidence honestly.
The most important message
Seizure diaries and videos can provide extremely valuable information because epilepsy specialists usually do not witness a person's everyday seizures themselves.
A good seizure record should show more than a number.
Where possible, record:
date
time
event type
whether awake or asleep
first symptom
consciousness and responsiveness
movements
duration
recovery
injuries
medication
rescue treatment
and anything genuinely relevant around the event.
Different event types should be recorded separately.
Possible events should be labelled as uncertain rather than automatically called seizures.
Videos can add important diagnostic information, and current NICE guidance specifically recommends using seizure footage where possible.
But safety comes before the camera.
Make the person safe first.
And remember that neither diaries nor videos are perfect.
Research using prolonged video EEG has shown both:
genuine seizures that patients never recorded
and reported events that were not associated with epileptic activity.
This is particularly important for seizures that:
happen during sleep
impair consciousness
interfere with memory
or have very subtle external signs.
So a diary should be understood for what it is:
the best available record of recognised events — not an infallible seizure counter.
Its value is greatest when it is combined with the person's history, witness information, clinical assessment and appropriate EEG or video-EEG investigation.
Sources and further reading
NICE — Epilepsies in children, young people and adults (NG217): Diagnosis and assessment.
NICE recommends detailed history after a suspected seizure and, where possible, the use of eyewitness accounts and video footage to inform assessment.
Epilepsy Action — Keeping a seizure diary.
Current UK guidance on recording seizure type, timing, duration, possible triggers, pre- and postictal symptoms, menstrual patterns, medication and video evidence. Last modified December 2025.
Epilepsy Action — 10 ways to prepare for appointments.
Recommends bringing seizure diaries and videos and provides guidance on what information to record and prioritising safety before filming.
Alva-Diaz C et al. Smartphone-based interventions for the diagnosis of epileptic seizures: systematic review and meta-analysis. Epilepsia. 2025.
Found that smartphone seizure videos can provide useful diagnostic information, although they remain an adjunct rather than a substitute for clinical assessment and video EEG.
Tatum WO et al. Assessment of the Predictive Value of Outpatient Smartphone Videos for Diagnosis of Epileptic Seizures. JAMA Neurology. 2020.
Prospective multicentre research found that expert interpretation of good-quality smartphone videos added diagnostic value to history and examination.
Video quality using outpatient smartphone videos in epilepsy. European Journal of Neurology. 2021.
Identified useful recording characteristics including adequate duration, field of view, interaction and audio.
Over- and underreporting of seizures: How big is the problem? Epilepsia. 2024.
Large ambulatory video-EEG study demonstrating substantial discrepancies between patient-reported events and objectively identified epileptic seizures.
Tonic-clonic seizures captured during ambulatory video-EEG are frequently unreported. Epilepsia. 2026.
In a selected monitored cohort, 45.1% of objectively recorded tonic-clonic seizures were unreported, with sleep associated with greater under-reporting.
Information reviewed: September 2026.
This page provides general educational information. Recording a seizure must never take priority over first aid, emergency treatment or protecting someone from immediate danger.
