A seizure emergency profile should help another person recognize what may be happening, protect the individual from injury, find the person’s approved instructions, and contact the right people.
It should not attempt to replace a clinician-approved seizure action plan. Instead, it should make the most relevant information easier to find when the person cannot explain it.
Begin with the person’s actual seizure plan
People can experience different seizure types, and the correct response may vary. Before creating an emergency profile, gather the person’s current seizure action plan and review it with the person, caregiver, and health care professional.
The Epilepsy Foundation describes a seizure action plan as a way to organize seizure information and tell others what to do in emergency situations. The emergency profile should support that plan, not invent new instructions.
Information to consider including
Depending on the individual, a personalized profile may include:
- Full name and preferred name
- Epilepsy or seizure diagnosis, using the wording approved by the care team
- Typical seizure type or appearance
- Usual duration and recovery pattern
- Known triggers, when relevant and confirmed
- Current medications, dosage, and schedule
- Allergies and medication reactions
- Rescue medication information
- Specific instructions from the seizure action plan
- Primary and backup emergency contacts
- Health care provider contact information
- Communication or support needs after a seizure
Only include rescue-medication directions that come from the person’s approved plan. A bystander should not be asked to guess a dose, route, or timing.
Describe what the seizure usually looks like
Seizures do not all look the same. Some may involve falling and shaking. Others may involve staring, confusion, repetitive movements, or a temporary loss of awareness.
A short individual description can help someone distinguish the person’s typical pattern from a new or unusual event. Examples of useful profile wording include:
- “Typical event begins with staring and reduced response.”
- “May be confused and tired for 20–30 minutes afterward.”
- “Do not restrain. Follow the attached seizure action plan.”
These are examples of structure, not instructions for every person. The actual wording must match the individual’s documented experience.
Include basic seizure first-aid guidance carefully
The CDC’s general seizure first-aid guidance includes staying with the person, moving nearby hazards, timing the seizure, gently turning a person who is lying down onto their side, and checking for medical identification.
The CDC also advises against restraining the person, putting objects in their mouth, or offering food or water before they are fully alert.
An emergency profile can link to general guidance, but person-specific instructions should remain clearly separated from general public information.
Make the 911 criteria easy to locate
The CDC advises calling 911 in situations that include a seizure lasting longer than five minutes, another seizure occurring soon afterward, trouble breathing or waking, injury, a seizure in water, a first known seizure, pregnancy, or diabetes with loss of consciousness.
The person’s clinician may provide additional individualized criteria. Put the approved emergency thresholds near the top of the profile rather than burying them in a long paragraph.
Plan for the recovery period
After a seizure, the person may need time, quiet, reassurance, or help contacting someone they trust. The profile can state:
- What the person is usually like during recovery
- How long recovery commonly takes for them
- Whether they may be confused, tired, frightened, or non-verbal
- What communication approach is most helpful
- Who should be called
- What would be unusual enough to require emergency help
This information can reduce unnecessary confrontation and help another person remain calm while still recognizing when the event differs from the person’s normal pattern.
Use visible and linked information together
A visible emergency ID should be easy to recognize and should direct the helper to the profile or caregiver. The detailed profile can then hold the longer seizure action information.
Use more than one access method when possible:
- Visible emergency wording
- QR code
- NFC tap
- Printed wallet backup
- Caregiver phone number
No single technology should be the only path to essential information.
Review and test it
Update the profile whenever medications, rescue instructions, contacts, seizure patterns, or clinician guidance change. At least twice a year:
- Compare the profile with the current seizure action plan.
- Confirm medication names and doses.
- Call the listed contacts.
- Scan and tap every access point.
- Replace damaged or unreadable physical identification.
CareID’s public Epilepsy & Seizures Community Guide provides general bystander guidance. A personalized CareID Connect profile is intended for the individual’s approved contacts and support information.
Explore Personalized CareID or compare CareID emergency-ID formats.
Sources and further reading
This article is general preparation information. It does not replace a seizure action plan, medication instructions, emergency services, or advice from a qualified health professional. Call 911 in the United States when the person meets emergency criteria or cannot be kept safe.