Seizure Diary Guide: What to Record and Why It Matters
"How many seizures have you had since your last visit?" For many people, the honest answer is "I'm not sure." Memory is unreliable after a seizure, and appointments can be months apart. A simple diary turns a vague answer into information your neurologist can act on.
Key takeaways
Record every event the same day, including small ones such as auras or staring spells.
Note what happened before, during and after, plus any missed doses or triggers.
Caregivers and short phone videos help fill the gaps you cannot remember.
Accurate diaries are required in many epilepsy studies, including X-ACKT and X-TOLE3.
What to record for each event
Date and time the seizure started, for example "Mar 4, 7:15 a.m."
Type, using the labels your neurologist gave you, or a short description such as "staring, lip smacking"
Duration, timed with a watch if possible
Before: any aura, what you were doing and how you felt
After: confusion, sleep, headache or injury, such as "confused 20 minutes, bit tongue"
Possible trigger: short sleep, a missed or late dose, illness, stress, alcohol or your menstrual cycle
Rescue medicine: whether it was used, and when
Tip: agree on labels with your neurologist
If you have more than one kind of seizure, ask your neurologist to name them (for example “Type A” and “Type B”) and describe each. Then you only need to write the label and anything unusual.
Paper, app or both?
Use whatever you will stick with. A paper notebook by the bed works well for people who have seizures at night. Phone apps can send medicine reminders and create charts to share. Some families use a shared phone note so every caregiver can add entries. The best diary is the one that gets filled in every time.
Habits that make a diary more useful
Write it the same day. Details fade fast, especially after a tonic-clonic seizure.
Log the small events too. Auras, myoclonic jerks and brief staring spells matter for diagnosis and treatment.
Count clusters carefully. If several seizures happen close together, note each one, or note the count and the time span.
Track doses. A tick box for each dose shows your neurologist whether missed doses line up with seizures.
Record a video, safely. A family member filming a short clip, once the person is safe, can help a specialist identify the seizure type. Ask for permission in advance.
Bring it to every appointment, along with your medicine list.
Patterns in a diary often reveal triggers people did not suspect. For the common ones, see why seizures happen on medication.
Already tracking seizures that keep happening despite treatment? You may be able to contribute to research.
Why diaries matter so much in research
In epilepsy trials, the main measure of whether a medicine helps is usually the change in seizure frequency. That number comes straight from participant diaries. In the X-ACKT and X-TOLE3 studies, participants record seizures during a baseline period of up to about 9.5 weeks before treatment begins, and then throughout 12 weeks of blinded treatment. Being able to keep an accurate diary is one of the entry criteria.
Study snapshot: two Phase 3 epilepsy studies
What is being studied
XEN1101 (azetukalner), an investigational once-daily capsule taken with the evening meal. It is designed to act on Kv7 potassium channels, which help calm overactive electrical signals in brain cells.
How it is tested
Added to a person's current seizure medicines and compared with placebo in a randomized, double-blind design. A baseline period of up to about 9.5 weeks is followed by 12 weeks of blinded treatment.
X-ACKT (NCT05667142)
People aged 12 and older with generalized epilepsy who have primary generalized tonic-clonic seizures, have tried at least two seizure medicines, and currently take 1 to 3.
X-TOLE3 (NCT05716100)
Adults aged 18 and older with focal epilepsy diagnosed at least two years ago, who have tried at least two seizure medicines and currently take 1 to 3.
After the blinded period
People who complete the 12 weeks may be able to join a separate open-label extension study, where everyone receives XEN1101.
Where
X-ACKT has dozens of research sites across the U.S., including epilepsy centers in Boston, Philadelphia, Atlanta, Houston, Cleveland, Seattle and Los Angeles. The study team can tell you the nearest site for either study.
If you have tried two or more medicines, read what drug-resistant epilepsy means for the full range of options specialists consider.
Frequently asked questions
What should I write in a seizure diary?
Record the date and time, type of seizure, how long it lasted, what happened before and after, possible triggers, missed doses and any rescue medicine used.
Should I record auras and small seizures?
Yes. Auras, brief staring spells and myoclonic jerks are useful for diagnosis and for judging how well treatment is working.
Are seizure diary apps better than paper?
Either works. Choose the option you will use consistently. Apps can add reminders and charts, while paper can be easier at the bedside.
Why do epilepsy clinical trials require a seizure diary?
Trials usually measure whether a medicine changes seizure frequency, which is calculated from diaries kept before and during treatment. Accurate records are essential for reliable results.