What to Record in a Focal Sensory Seizure Diary or Video?

Keeping a detailed record of your focal sensory seizures provides your care team with vital clues. Your personal account and witness observations help your neurologist understand what you are experiencing, though these details are used alongside clinical history, physical exams, and tests like an EEG (an electroencephalogram, which measures brain waves) to form a complete picture ^[1]. A thorough diary or video should capture your earliest sensations, any visible changes, and details about your environment and recovery.

What to Do When You Feel a Seizure Starting

If you experience a warning sign or early symptom, prioritize safety immediately:

• Stop what you are doing, especially if you are driving, cooking, or using machinery.
• Sit or lie down in a safe place away from stairs, traffic, or sharp objects ^[2].
• Alert someone nearby so they can stay with you and time the event ^[3].

Documenting Your Experience: The First Sensation and Spread

Focal sensory seizures begin with a subjective feeling that only you can experience. In epilepsy, an aura (an early feeling or sensation) is actually the very first part of the focal seizure itself. Because the first symptom is an important piece of the diagnostic puzzle, try to record:

• The first sensation: Describe exactly what you felt in your own words (e.g., tingling, heat, a specific smell, or a sense of deja vu) ^[4].
• Side of the body: Note exactly where the feeling started and whether it was on the left or right side ^[4][5].
• Sequence and spread: Did the sensation move? Note if it started in your hand and spread up your arm, or if it evolved into muscle twitching, stiffness, or a larger seizure ^[6][5].
• Memory and awareness: Record whether you could hear, understand, and remember what was happening during the episode ^[7][8].

Safety Note: If you experience sudden, new symptoms—such as a first-ever episode, persistent one-sided weakness, facial droop, or severe headache—seek urgent emergency evaluation, as these may be signs of other serious medical conditions.

Capturing the Context

To help identify patterns, every diary entry should include the circumstances surrounding the event ^[9][10]. Record:

• Date, time, and duration: Exactly when it started and how many seconds or minutes it lasted ^[9].
• Activity: What were you doing right before the seizure began?
• Potential triggers: Note how you were sleeping, your stress levels, and if you have been sick or running a fever ^[10].
• Medication timing: Write down when you took your last dose of anti-seizure medication and whether any doses were missed or late ^[9].

What a Witness Should Look For

Because a person having a seizure may not remember all of its features, witness observations are incredibly valuable ^[7]. Ask your family, friends, or coworkers to watch for:

• Ability to respond: A witness can calmly ask one simple question or give one basic command (like “squeeze my hand”) ^[7]. They should never shake you or repeatedly test you. They should simply record exactly how you responded, keeping in mind that a lack of response could be due to a temporary speech or movement problem, not just a loss of awareness.
• Visible movements: They should describe any stiffening, repetitive movements (like lip-smacking), or if your head and eyes forcefully turn to one side ^[11][5].
• Autonomic signs (involuntary body functions): They should look for pauses or changes in breathing, or changes in skin color, such as turning pale or flushed ^[11].
• Recovery: Note how the seizure ends. Record when you can answer and interact normally again, and whether there is confusion, exhaustion, or weakness ^[1][12].

First Aid and Safe Video Recording

A bystander’s video can give your neurologist a wealth of information, but safety always comes first ^[3].

When to Put the Camera Down and Help:
A witness should never delay providing first aid or emergency help to get a video ^[13]. They should stop filming to clear away nearby hazards, cushion your head, and protect you from falls ^[2]. If convulsions occur, they should not turn you on your side while you are actively shaking; however, once the seizure stops (or if you are vomiting), they should place you on your side in the recovery position (a safe resting position that keeps the airway clear) ^[14]. Witnesses must never put anything in your mouth or forcefully restrain you ^[3][15].

When to Call for Emergency Help:
Always follow your neurologist’s individualized Seizure Action Plan, including instructions for rescue medications. A general rule is to call emergency services immediately if ^[16][17]:

• The seizure lasts longer than 5 minutes.
• You have difficulty breathing or do not wake up normally after the seizure stops.
• Seizures happen repeatedly without you recovering in between.
• It is a first-time seizure, or it occurs in water or during pregnancy.
• A serious injury occurs.

Guidelines for a Useful, Respectful Video:
If it is safe to film, the recording should start as early as possible. It should show your full body and face, and ideally capture the witness stating the time and date out loud.

• Privacy: A bystander should obtain your consent when feasible, avoid recording identifiable bystanders, and stop filming once the seizure is over.
• Sharing: Keep the original unedited file, and use a secure patient portal to share it with your clinician rather than posting it to public or social media channels.