🆘SEIZURE FIRST-AID — The Ambassador / Family Equivalent of BE-FAST
Knowing what to do during a seizure is the highest-leverage Ambassador role in epilepsy. Most seizures stop on their own within 1–3 minutes. Your job is to keep the person safe, time the seizure, and call 911 only when it crosses one of the 911 thresholds. NEVER put anything in someone's mouth — they cannot swallow their tongue. NEVER restrain. The Epilepsy Foundation framework is STAY · SAFE · SIDE. Print this banner. Drill it with family and coworkers. This is how you save a life.
🎯Three Phases · One Force Field
Every square belongs to one of three content types — not three levels you climb. They tell you what kind of square you’re reading: a concept to understand, a habit to live, or a way to share what you’ve learned. Where you actually track personal progress is your Prepared Patient Course (modules completed) and the Skills Lab (skills signed off). Inside each square’s detail panel, the four sections — Concepts · Skills · Actions · Plan — are the building blocks of these phases.
📘 Learn It Content type
Identity earned: Self-Advocate. The "know" — what epilepsy is (a spectrum of disorders, not a single disease), the ILAE classification basics (focal vs generalized vs combined), the 2-or-more-unprovoked-seizure definition, common syndromes (TLE, JME, absence, LGS, Dravet), the difference between epilepsy and a single seizure / NEAD-PNES, your seizure type, and the seizure first-aid centerpiece.
🛠 Live It Content type
Identity earned: Care-Team Member. The "do" — daily skills (medication adherence as the #1 lever, sleep protection, alcohol moderation, trigger awareness, seizure diary, photosensitivity precautions, swimming-with-buddy rule, driving-rule compliance, rescue-med readiness) and this-week actions that turn skills into habits — including building the family seizure-first-aid Ambassador partnership.
📣 Share It Content type
Identity earned: Ambassador. The "carry forward" — handle epilepsy identity honestly, mentor a newly-diagnosed person via Epilepsy Foundation peer programs, run community seizure-first-aid trainings (highest-leverage public-health work), navigate the ADA / FMLA / 504 / IEP workplace and school stack, and address geographic, racial, and pediatric disparities in epileptology access.
🛡️Your Force Field — 16 Squares
Click any square to open its detail panel. Each square is a tile in your shield. Keep clicking, learning, and acting — your Force Field gets stronger every step.
What Is Epilepsy?
A spectrum of disorders, not a single disease. ILAE definition: 2+ unprovoked seizures >24 hr apart, OR 1 unprovoked seizure with high (>60%) recurrence risk, OR diagnosis of an epilepsy syndrome. Multiple etiologies: structural, genetic, infectious, metabolic, immune, unknown. ~1 in 26 lifetime risk. ~70% achieve seizure freedom on AEDs over time. A single seizure ≠ epilepsy.
Primer360 Human Anatomy
Brain Networks & Seizure Genesis
A seizure is cortical hyperexcitability + hyper-synchrony — neurons firing together when they shouldn't. Focal seizures begin in one network; generalized involve both hemispheres from onset. Driven by imbalance between excitatory glutamate and inhibitory GABA. Common epileptogenic zones: mesial temporal lobe (hippocampus), frontal lobe, occipital. AEDs work by raising the seizure threshold.
AnatomyWho Gets It? — Types & Etiologies
ILAE 2017 classification: focal · generalized · combined · unknown. Etiologies: structural, genetic, infectious, metabolic, immune, unknown. Common syndromes: TLE with mesial temporal sclerosis, JME (juvenile myoclonic), childhood absence, LGS, Dravet. NEAD/PNES distinction (psychogenic, not epilepsy — different treatment, no stigma). Single seizure ≠ epilepsy.
PrimerThe Numbers — Seizure Type, Frequency, EEG, MRI
~3.4 million Americans with active epilepsy; ~470K children. Track seizure type + frequency, AED adherence, AED level when meaningful (phenytoin, carbamazepine, valproate routinely; most others not), EEG findings, MRI findings, triggers. ~70% achieve seizure freedom on AEDs over time. The seizure diary is the single most useful tool.
PrimerRecognize Seizure First-Aid (STAY-SAFE-SIDE)
STAY with them, time the seizure. SAFE — clear hard objects, cushion head. SIDE — recovery position on their side once convulsions stop. NEVER put anything in mouth, NEVER restrain. 911 IF: >5 min · repeats without recovery · first-time · in water · pregnant · injured · diabetes · won't wake up. Status epilepticus = >5 min or repeats without recovery — emergency.
Learn ItDiagnostic Workup + Wellness
EEG (routine, sleep-deprived, ambulatory, video EEG monitoring — gold standard). MRI epilepsy-protocol with thin temporal cuts. Blood work (electrolytes, glucose, CBC, metabolic, infection if appropriate). Genetic testing in select cases (early-onset, syndromic, family history). Epileptology referral if poor control after 2 AEDs (= drug-resistant epilepsy → surgical workup eligible). The "first seizure" workup differs from "epilepsy."
Learn ItKnow My Numbers
Seizure type + frequency · AED dose / blood level when relevant · EEG findings · MRI findings · triggers (sleep, missed dose, alcohol, stress, illness, period, photic) · sleep hours · mood (PHQ-9 / GAD-7) · period diary if catamenial · injury log · last seizure date (driving). Bring a one-page numbers card.
Learn ItLifestyle Force Field — Adherence + Sleep First
Medication adherence is the #1 lever — non-negotiable. Sleep deprivation is the single biggest trigger — protect 7–9 hours. Alcohol moderation (excess + withdrawal trigger). Stress management. Photosensitivity awareness (~3% of epilepsy). Swimming with a buddy. Driving rule compliance. Height-from-water caution. Exercise is encouraged with type-specific caveats. MIND/Mediterranean pattern. Mood support.
Learn ItMedications + Therapies — All Levers
AED/ASM choice depends on seizure type. Generic-vs-brand caution (some patients break through on unmonitored switches). Massive drug-drug interactions — especially OCs, anticoagulants. Pregnancy: folate; valproate caution (high teratogenicity); levetiracetam / lamotrigine generally preferred. FDA AED-suicidality warning (real but small — monitor, don't avoid). SJS/TEN severe rash → ER. Rescue meds (rectal/intranasal benzos). Refractory: surgery, VNS, RNS, DBS, ketogenic diet. Never stop AEDs abruptly.
Live ItCare Team Members
Epileptologist if accessible · General Neurology · PCP · Pharmacist · Neuropsychology · Behavioral Health · EEG Technologist · Sleep Medicine if relevant · Genetic Counselor in select cases · Social Worker · School Nurse / OT if pediatric · Epilepsy Foundation peer mentor · family Ambassador.
Live ItTelemedicine & Tech
Telehealth epilepsy at parity for routine follow-up. Seizure-detection wearables (Empatica Embrace, SmartWatch Inspyre). Seizure-diary apps. Sleep-tracking. Medication-reminder apps. Smart pill caps. Epilepsy Foundation Helpline 1-800-332-1000 (24/7). Text 38255. Remote EEG / ambulatory EEG. Video monitoring at home in select cases.
TechInsurance, Treatment Cost & Help
Most AEDs are generic and affordable; brand-name newer agents have copay programs. Epilepsy Foundation HelpLine 1-800-332-1000. SSDI achievable for refractory epilepsy. ADA covers epilepsy. FMLA. State EPSDT for pediatric. School 504 Plan / IEP. Veterans + post-traumatic epilepsy presumptive in some cases.
Live ItEquity, Access & Cultural Competence
Geographic disparity in epileptology access — telehealth helping. Racial disparities: Black Americans have higher epilepsy rates and worse outcomes; lower access to surgery and specialty care. Pediatric disparities. Pregnant women: historically excluded — now North American AED Pregnancy Registry tracking. Older adults — onset more common than people realize (post-stroke). Veterans: post-traumatic epilepsy. Stigma still severe in many communities.
Share ItTalk to Kids, Partner, Employer, School
Kids: plain language. Partner: seizure first-aid is THE centerpiece skill. Employer: ADA covers epilepsy — accommodations include seizure-safe workspace, sleep-respecting schedule, post-event recovery time; FMLA covers AED titration, surgical workup. Driving rules — state-specific seizure-free interval (typically 3–12 months); self-reporting in some states. School: 504 / IEP, school-nurse seizure action plan, teacher first-aid training.
Share ItMentor & Share Insights
Epilepsy Foundation peer programs. AES community. CURE Epilepsy. RWJF Epilepsy efforts. The newly-diagnosed person who hears "I had focal seizures, I tried 3 AEDs, the second worked, I drive, I work, I had two kids on lamotrigine — here's what I wish I'd known" gets a different orientation than statistics. Community seizure-first-aid Ambassador work = high-leverage public-health.
Share ItJoin the ROI Study (PHIT)
PHIT — Population Health Impact Tracking. Pairs epilepsy outcome tracking (seizure freedom, AED side effects, ED visits, hospitalizations, status events, SUDEP risk markers, surgical referral rates, employment, driving, QoL) with cost data. Aggregate & anonymous. Cross-references the North American AED Pregnancy Registry and AES research networks.
Study🩺 Hand-off to my Epilepsy Team
Print and bring to your next visit. This page tells your team what you have prepared for, what you want to focus on, and how you would like to participate as an active member of your own care team.
- I am a Prepared Patient in training for epilepsy. I have reviewed all 16 squares of this Force Field Fact Sheet.
- I have started building my Health Passport, my seizure diary (when, where, type, duration, triggers, recovery), my AED adherence log, my sleep log, my mood log (PHQ-9 / GAD-7), and my family seizure first-aid plan.
- I want to teach back what I have learned — especially around my seizure type, my AED choice + dose + blood level if relevant, my driving status (state-specific seizure-free interval), my pregnancy plan if applicable, my SUDEP risk factors and how I'm modifying them, and the family seizure first-aid drill. Please correct anything I've misunderstood.
What helps my visit
Two minutes for me to teach back. One question I prepared. My latest seizure diary, AED adherence log, sleep log, mood screen. Confirm latest EEG, MRI, AED level (if relevant), driving status, and follow-up interval on the chart. Ask me about mood, missed doses, sleep, alcohol, and SUDEP risk modifiers directly.
What I am working on
Daily AED adherence (#1 lever) · 7–9 hr sleep · trigger log · seizure diary · alcohol moderation · driving compliance · rescue-med readiness · family first-aid drill · school 504 / IEP if pediatric · pregnancy planning + folate if applicable · ketogenic diet entry plan if appropriate · mood support.
How I want to participate
Shared decisions. Honest conversation about AED choice (efficacy + side effects + pregnancy + interactions), surgical evaluation if I'm drug-resistant, VNS/RNS/DBS or ketogenic diet options. AHRQ SHARE Approach. Refer to neuropsychology, behavioral health, social work, school nurse as relevant.
🔬 Help Prove This Works — Join the FFH ROI & PHIT Study
The Prepared Patient program is being studied to see whether better preparation actually improves outcomes — seizure freedom rates, AED adherence, fewer ED visits, fewer status events, lower SUDEP-risk profile, more equitable access to epileptology and surgical evaluation, more employment, more driving freedom, better caregiver outcomes — for epilepsy patients and families. Your participation is voluntary, your data is aggregated and anonymized, and you can withdraw at any time. We also encourage parallel enrollment in the North American AED Pregnancy Registry if you are pregnant or planning, and AES-community research opportunities.
➕ Add-On Force Field Card · Epilepsy Skill Mastery
If your care plan adds a specific skill or device, bolt on a 5-step Add-On Card. For epilepsy, common bolt-ons include: seizure diary, AED adherence routine, rescue-med training (rectal diazepam gel or intranasal midazolam administration), sleep-hygiene routine, photosensitivity precautions, swimming-with-buddy rule, driving-conversation prep, school IEP / 504 prep, pregnancy planning + folate routine, ketogenic / modified Atkins diet entry plan, VNS / RNS magnet routine, family seizure first-aid drill (STAY-SAFE-SIDE), school-nurse seizure action plan setup, SUDEP risk-modifier review.
Introduce
What it is, why it matters, what it does
Coach
Watch a demo + walk-through
Practice
Do it with a coach watching
Train
Use it daily with a check-in
Test
Demonstrate competence + earn badge
Ready to go deeper?
The Prepared Patient · Epilepsy course turns this fact sheet into a guided journey — the seizure first-aid centerpiece, ILAE classification basics, AED-by-type matrix, drug-drug interactions, pregnancy planning, the bidirectional mood-epilepsy loop with the FDA AED-suicidality warning, refractory options (surgery, VNS, RNS, DBS, ketogenic diet), driving rules, and your printable Health Passport. Earn Aware → Active → Certified.