🏅Your Path to Certification
Earn your way up three evidence-based tiers. Each builds on the last. Finish all three and receive your Certified Prepared Patient · Epilepsy badge and printable certificate, recognized across the FFH Network.
Aware · Identity: Self-Advocate
You know your body and your condition. Layer 1 — Condition Literacy.
- Complete Modules 1–4 (Condition Literacy)
- Pass the "What Epilepsy Is" quiz (≥80%)
- Identify your seizure type (focal vs generalized; with or without awareness; sub-type), your etiology (structural / genetic / infectious / metabolic / immune / unknown), your EEG + MRI findings, your AED regimen with doses + timing, your trigger profile (sleep deprivation, alcohol, missed doses, illness, stress, hormonal cycle, photic if applicable), and the seizure-first-aid framework (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911)
- Build your seizure diary + AED adherence log + sleep tracker + trigger log + PHQ-9 / GAD-7
Active · Identity: Care Team Member
You partner with your team and navigate the system. Layer 2 — Care & System Literacy.
- Complete Modules 5–7 (Self-Monitoring · When to Call vs ED · Comorbidity Awareness)
- Demonstrate teach-back on the status epilepticus 911 rule (>5 min or repeats without recovery), the SJS/TEN severe-rash rule (lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital → ED if any new rash), the NEVER abruptly stop AEDs rule, your rescue-medication plan (Nayzilam / Valtoco / Diastat) and your "when to call vs ED" decision rule
- Complete one "great visit" prep + debrief with your epileptologist or neurologist
- Establish neurology / epileptology / neuropsychology / behavioral-health / pharmacist referrals; sleep-medicine eval if relevant; genetic counseling if select indication; Comprehensive Epilepsy Center referral if 2+ AEDs failed
- Successfully resolve one prior auth (e.g., for cenobamate / brivaracetam / Epidiolex / Fintepla / VNS / RNS / DBS / epilepsy surgery / ketogenic-diet program), copay-help application, or pre-pregnancy folate + AED-selection planning if applicable
Certified Prepared Patient · Identity: Ambassador
You teach, mentor, fight stigma, and shape research & policy. Layer 3 — Advocacy & Ambassadorship.
- Complete Modules 8–10 (Family & Care Team · Talk to Kids/Partner/Employer + Mentor · Mastery & Graduation)
- Mentor 1 newly-diagnosed person or family via Epilepsy Foundation / AES community / CURE Epilepsy OR present at a faith-community / employer / school / support-group education session — including seizure-first-aid drilling for the family Ambassador
- Sign the Prepared Patient Pledge
- Complete a written seizure action plan (school 504/IEP if pediatric; family + employer version for adults), a SUDEP-modifiable-risks plan (adherence + GTC control + sleep + room-sharing or bed-alarm if nocturnal), and a caregiver-wellness plan for your Ambassador
- Submit one advocacy action (story, Walk to End Epilepsy, state-level driving-fairness or school-nurse-mandate comment, telehealth-parity advocacy, Comprehensive Epilepsy Center workforce expansion, SUDEP-awareness research, community seizure-first-aid outreach)
📋Master Pre / Post Assessment
Where You Stand — Confidence Before & After
Seven dimensions of being a Prepared Patient. Answer once at the start of your journey and again at the end. Your goal is to see real growth across understanding, self-management, communication, and optimal utilization — knowing when to call your team, when an issue can wait for clinic, and when to go to the ER. Your answers stay on this device unless you choose to share with your clinician.
📈 Your Pre→Post Growth
📞Know Who to Call — Neurology / Epileptology First, 911 for Status & SJS Rash
Epilepsy care runs as a long arc — diagnosis, AED titration, seizure-freedom (about 70% reach it on AEDs over time), or refractory epilepsy with the next-line menu (epilepsy surgery, VNS, RNS, DBS, ketogenic / modified Atkins / low-glycemic-index diets). Most days are routine. Some days bring AED-adjustment calls. A few bring red flags. Knowing the right number to call — your neurology / epileptology team, your PCP, the Epilepsy Foundation 24/7 Helpline, or 911 — saves time, dignity, and life. Save these numbers in your phone today. The numbers below are placeholders — your institution will fill in the right ones for you.
🚑 Call 911 right away for any of these
Status epilepticus — convulsive seizure lasting >5 minutes OR seizure that repeats without full recovery in between. This is the critical emergency · seizure with injury (head injury, fracture, drowning, burn) · seizure in water (always 911 + remove from water + side recovery position) · first-ever seizure in someone without known epilepsy · seizure in pregnancy · any new severe rash on lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital (SJS/TEN concern — emergency) · severe abdominal pain / vomiting + jaundice on valproate or felbamate (hepatotoxicity / pancreatitis) · active suicidal intent or attempt (988 or 911 / ED). When in doubt, go.
🧭 Same-day call to Neurology / Epileptology — most issues are addressable in clinic
For cluster seizures (multiple in 24 hr without return to baseline — use rescue med per plan first; if continues → ED), new seizure type different from your baseline, break in long-stable seizure freedom, severe ataxia / diplopia / slurred speech (suspect AED toxicity → call team for levels), severe mood symptoms or new aggression on perampanel / levetiracetam, painful urination + back pain on topiramate / zonisamide (kidney stones), cognitive crisis on topiramate (dose adjustment), missed pills with no immediate seizure (call for guidance — never double-up without team direction), or pregnancy planning / pregnancy confirmation on AEDs, call your [Epileptology / Neurology line: (555) 123-4567]. Most issues are addressable in clinic — and the ED rarely manages AED titration the way your team does.
💬 Routine questions, refills, scheduling, peer support
Use [MyChart portal] first — most messages answered within 1 business day. For AED refills or copay help (especially newer agents like brivaracetam, cenobamate, eslicarbazepine, Epidiolex, Fintepla), call [Pharmacy: (555) 222-9050]. For peer mentoring, family support, navigation, seizure-first-aid training, and treatment-locator help, call the Epilepsy Foundation 24/7 Helpline 1-800-332-1000 (Spanish 1-866-748-8008 · Text 38255) — free, confidential. For research and advocacy: AES (American Epilepsy Society) · CURE Epilepsy. For pediatric, school 504/IEP, and developmental epilepsy syndromes: Epilepsy Foundation chapters and the AES patient-education hub.
🆘 Mood crisis · suicidal thoughts → 988 (call or text)
Depression and anxiety affect 30–50% of people with epilepsy. The FDA AED-and-suicidality warning is real but small (relative risk ~1.8 in pooled analysis; absolute risk small) — the answer is monitoring, not avoidance. Any thoughts of wanting to die or hurt yourself = call or text 988 (Suicide & Crisis Lifeline · free, confidential, 24/7). Active risk → 911 / ED. Veterans: 988 then press 1. Crisis Text Line: text HOME to 741741. Asking about suicide does not plant the idea. Levetiracetam can cause mood/behavioral side effects (~15%) — pyridoxine 100 mg may help; otherwise switch agents. Ask your team.
📚Condition Literacy & the 10 Prepared Patient Competencies
A Prepared Patient builds three kinds of health literacy — and grows into three identities. Each competency works through the FFH three pillars: Learn It · Live It · Share It.
Advocate for Self
You speak up for your own care, plan, pain, and goals.
Care Team Member
You partner with your team — not above, not below.
Ambassador
You teach, mentor, and shape research, policy & access.
🧬 Condition Literacy Learn It · Tier 1 Aware
"I know my body and my disease." The foundation. Without this, nothing else holds.
What Epilepsy Is
The ILAE 2014 definition: ≥2 unprovoked seizures >24 hr apart; OR 1 unprovoked + ≥60% recurrence risk; OR diagnosis of an epilepsy syndrome. ILAE 2017 operational classification: focal (with or without awareness) / generalized (TC, absence, myoclonic, atonic, tonic, clonic) / combined / unknown. 2017 etiology: structural / genetic / infectious / metabolic / immune / unknown. Cortical hyperexcitability + synchrony; glutamate-vs-GABA balance. What it is NOT: a single seizure (workup but not epilepsy by itself); syncope; NEAD/PNES (real, not faking — needs different treatment, video EEG to distinguish); migraine aura. ~3.4M Americans; ~470K children; lifetime risk ~1 in 26.
Know My Numbers & Risk Factors
Your central dashboard: seizure type + frequency, etiology category, EEG findings (interictal epileptiform discharges; sleep-deprived / ambulatory / video EEG monitoring — gold standard for atypical seizures, refractory cases, surgical eval), MRI (epilepsy protocol — thin temporal-lobe cuts), genetic findings if tested. Triggers: sleep deprivation (#1), alcohol (esp. withdrawal), missed AED doses, illness/fever, stress, hormonal cycle (catamenial), photosensitivity (~3%). AED levels when relevant (phenytoin, carbamazepine, valproate sometimes; most others don't need routine).
Lifestyle Force Field — Adherence + Sleep Are the #1 Levers
AED adherence is the single biggest lever in seizure control — about 70% reach seizure freedom on AEDs over time. Sleep 7–9 hours — sleep deprivation is the #1 trigger. Alcohol moderation — excess and especially withdrawal trigger seizures (honest framing, not "no alcohol ever"). Stress management. Photosensitivity awareness if applicable (3–5% of epilepsy is photosensitive — EEG confirms). Water safety: swim with a buddy who knows seizure first-aid; showers preferred to baths. Driving rules — state-specific 3–12 month seizure-free interval. Exercise broadly safe and beneficial; helmet for high-risk seizure types.
Medications — AED-by-Seizure-Type, SJS/TEN Warning, Pregnancy Planning
The AED-by-seizure-type matrix: focal (lamotrigine, levetiracetam, oxcarbazepine, lacosamide, brivaracetam, carbamazepine, cenobamate); generalized TC (lamotrigine, levetiracetam, valproate); absence (ethosuximide first); myoclonic / JME (valproate, levetiracetam); LGS (rufinamide, valproate, Epidiolex, clobazam); Dravet (valproate, clobazam, stiripentol, Fintepla, Epidiolex). SJS/TEN severe-rash warning — lamotrigine, carbamazepine, oxcarbazepine, phenytoin, phenobarbital → ED if any new rash. HLA-B*15:02 in Asian descent. Pregnancy: avoid valproate (~10% malformation, ~30% IQ reduction); avoid topiramate (cleft, IUGR); levetiracetam + lamotrigine preferred (lamotrigine dose-up in pregnancy). NEVER stop AEDs abruptly. Rescue meds: Nayzilam, Valtoco, Diastat. Refractory (~30%): epilepsy surgery, VNS, RNS, DBS, ketogenic diet.
🤝 Care & System Literacy Live It · Tier 2 Active
"I'm part of the team. I navigate the system." Where most preventable ED visits, decompensation crises, and frustration happen — and where this course pays off the most. Optimal utilization lives here.
Self-Monitoring — Seizure Diary, Triggers, Sleep, Mood, Adherence
The seizure diary: when, where, type, duration, triggers, recovery time, injury, post-ictal mood. AED adherence (pillbox, app, smart-cap). Sleep tracking. Trigger ID (sleep, alcohol, missed dose, hormonal, stress, illness, photic). Mood — PHQ-9 + GAD-7 monthly. Catamenial pattern tracking if applicable. Seizure-detection wearables (Empatica Embrace, SmartWatch Inspyre). Video diary (when safe and consented) for diagnostic clarity if NEAD/PNES suspected. The "what changed in the last 6 months" question.
When to Call vs Go to ED — Status Epilepticus = 911
Status epilepticus (seizure >5 min OR repeats without recovery) → 911 immediately. Seizure with injury / in water / first-ever / pregnancy → ED/911. Any new severe rash on lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital → ED (SJS/TEN concern). Severe abdominal pain / jaundice on valproate → ED. Cluster seizures → use rescue med per plan; if continues → ED. New seizure type / break in long-stable freedom / AED toxicity / kidney-stone pain on topiramate-zonisamide / new aggression on perampanel → same-day call. Mood crisis → 988.
Comorbidity Awareness — The Epilepsy Ecosystem
Frame: "the epilepsy ecosystem." Depression / anxiety 30–50% (cross-references FFH Depression + Anxiety; 988 surfaced; FDA AED-suicidality warning real but small). SUDEP ~1/1000 patient-years overall; nearly zero in seizure-free patients; up to ~1/100 in poorly-controlled with frequent GTCs; modifiable: adherence, GTC control, sleep, room sharing or bed alarm. Cognitive effects from seizures + AEDs + etiology (topiramate / phenobarbital / zonisamide more cognitive impact). Bone health on long-term enzyme-inducing AEDs. Pregnancy / contraception (AED-OC interactions). NEAD/PNES coexistence. Brief vascular cluster cross-reference (post-stroke epilepsy — md5 7587a559b24ca8b9bab40b1756475d84 — cross-referenced, NOT embedded).
📣 Advocacy & Ambassadorship Share It · Tier 3 Certified
"I speak up. I lift others. I shape the future." This is what turns a Prepared Patient into a force multiplier for the whole community.
Family, Caregiver, and the Care Team — Seizure First-Aid Centerpiece
Seizure first-aid is the centerpiece of caregiver education — STAY-SAFE-SIDE-NEVER-TALK-DIARY-911. Stay with them, time it, turn to side, don't put anything in mouth, call 911 if >5 min / repeats / first-time / pregnancy / injury / in water. Drill it. Print for fridge. SUDEP awareness without panic — modifiable risks empower (adherence, GTC control, sleep, room sharing or bed alarm if nocturnal). Care-partner mental health — high prevalence; respite via Epilepsy Foundation chapters. Family Ambassador (the seizure-first-aid carrier).
Sharing — Kids, Partner, Employer; Driving Rules; Community Ambassador
Kids: plain language — "Mom has epilepsy; her brain sometimes has electrical storms; here's what to do (Stay-Safe-Side or 911)." ADA covers epilepsy; reasonable accommodations (seizure-safe workspace, schedule flexibility for sleep, post-seizure recovery time); FMLA covers titration / EEG / surgery; SSDI achievable for refractory epilepsy. Driving rules — state-specific 3–12 month seizure-free interval; physician self-reporting mandatory in CA, DE, NJ, NV, OR, PA. School 504 / IEP for kids; teacher seizure-first-aid training. Reduce stigma: not a curse, not contagious, not mental illness. The community-Ambassador role for stranger-seizure first-aid is high-leverage. Peer-mentor track via Epilepsy Foundation / AES / CURE.
Mastery & Graduation — Sustained Seizure Control or Graceful Refractory Management
Sustained seizure control or graceful management of refractory epilepsy. Refractory options (~30%): epilepsy surgery (presurgical workup, resective options — temporal lobectomy highest-yield, lesionectomy, corpus callosotomy, hemispherectomy), VNS, RNS (NeuroPace), DBS (anterior thalamic nucleus, FDA 2018), ketogenic / modified Atkins / low-glycemic-index diets. Peer-mentor track. Advocacy: driving fairness, employment protections, school nurse mandates, federal research funding (CDC, NINDS), Comprehensive Epilepsy Center workforce expansion, SUDEP awareness. Long-arc identity: Prepared Patient — Epilepsy for life.
👥My Care Team
Your team is bigger than just the doctor — and the family Ambassador is part of it. Click any card to edit, or click the + tile to add a new team member. Saved on this device. The Force Field Emergency Card below auto-syncs from this list. Starter roster pre-populated for Epilepsy — your institution can edit any row. The Force Field Emergency Card auto-syncs from this list and surfaces the Epilepsy Foundation 24/7 Helpline + the seizure-first-aid framework + the AED "NEVER" list.
📖Glossary — words you'll hear
Plain-English definitions for terms doctors and labs use. Tap to expand.
Seizure (vs convulsion vs spell)
Aura
Postictal
Tonic / clonic / tonic-clonic / atonic / myoclonic / absence
Focal vs generalized
Status epilepticus
AED / ASM (anti-seizure medication)
Refractory / drug-resistant epilepsy
SUDEP (Sudden Unexpected Death in Epilepsy)
Photosensitivity
NEAD / PNES (Psychogenic Non-Epileptic Events)
Epileptiform discharge / spike-wave
VNS / RNS / DBS
Ketogenic diet
Comprehensive Epilepsy Center (CEC / Level-3 or Level-4 NAEC center)
Vagal Nerve Stimulator magnet
🧪Screen & Lab Tutor — your EEG, MRI, AED levels, and what your epilepsy workup means
Screen & Lab Tutor — your EEG, MRI, AED levels, and what your epilepsy workup means
In epilepsy, the most important "tests" are your EEG (routine / sleep-deprived / ambulatory / video EEG monitoring), your brain MRI (epilepsy protocol), and selectively your AED levels, HLA testing (in select populations), and genetic testing. Mood screens (PHQ-9 / GAD-7) and bone density (DEXA on long-term enzyme-inducing AEDs) round out the picture. Your "normal" may differ from a friend's. Ask your team to write your personal baseline in the right column.
| Test / Screen | What it measures | Typical adult range | What to ask if it's off | My baseline |
|---|---|---|---|---|
| Routine EEG | A 30–60 minute scalp recording of brain electrical activity. Looks for interictal epileptiform discharges (spikes, sharp waves, spike-wave complexes) and abnormal background. Normal EEG does NOT rule out epilepsy. Abnormal epileptiform EEG without seizures does not always mean epilepsy. | Normal background; no epileptiform discharges | What does my EEG show? Any spike-wave or focal slowing? What focus / type does it suggest? | [fill in] |
| Sleep-deprived EEG | Same as routine EEG, but the patient has been awake all night before — sleep deprivation increases the yield for epileptiform discharges in many epilepsy types. | May show discharges not seen on routine EEG | Should we get a sleep-deprived EEG to increase yield? | [fill in] |
| Ambulatory EEG | A multi-day at-home EEG recording. Useful when seizures are infrequent and not captured in clinic. Patient + family keep an event log to correlate with the EEG. | Captures interictal patterns; may capture events | Would ambulatory EEG help characterize my events? | [fill in] |
| Video EEG monitoring (LTM, EMU) | The gold standard. Inpatient (or sometimes home-based) extended video + EEG. Captures actual events on camera + EEG for definitive classification. Used for atypical seizures, NEAD/PNES distinction, treatment-resistant epilepsy, and presurgical evaluation. | Captures ictal patterns or rules them out | If my events aren't well-controlled or are atypical — should we admit for video EEG monitoring at a Comprehensive Epilepsy Center? | [fill in] |
| Brain MRI (epilepsy protocol) | High-resolution MRI with thin temporal-lobe cuts. Looks for structural lesions: hippocampal sclerosis (mesial temporal), focal cortical dysplasia, tumors, vascular malformations, prior strokes, encephalomalacia. Standard non-epilepsy MRI may miss subtle epileptogenic lesions — request the epilepsy protocol. | Normal or specific lesion identified | Was an epilepsy-protocol MRI done? Any lesion? | [fill in] |
| AED levels (phenytoin / carbamazepine / valproate when relevant) | Most newer AEDs do NOT need routine level monitoring. Phenytoin (target 10–20 µg/mL free), carbamazepine (4–12 µg/mL), and valproate (50–100 µg/mL) sometimes do — especially during titration, suspected toxicity, breakthrough seizures, or pregnancy. | See agent-specific therapeutic ranges | Should we check a level given my breakthrough seizures / suspected toxicity? | [fill in] |
| Lamotrigine level (in pregnancy) | Lamotrigine clearance increases dramatically in pregnancy. Levels drop, often below therapeutic, by the second trimester — risking breakthrough seizures. Pregnancy-specific dose increases, with serial level monitoring, are standard. Doses come back down post-partum. | Pre-pregnancy baseline as the target | Is my lamotrigine level being monitored through pregnancy? Has my dose been increased? | [fill in] |
| CMP / CBC (AED safety monitoring) | Baseline and periodic — sodium (low on carbamazepine, oxcarbazepine — hyponatremia), liver enzymes (valproate, felbamate), white count (carbamazepine — agranulocytosis rare), platelets, kidney function. | Within normal lab ranges | Are my labs in range? Any signal of AED toxicity? | [fill in] |
| Hepatic panel (valproate, felbamate) | More frequent monitoring on valproate (hepatotoxicity, hyperammonemia) and felbamate (hepatotoxicity, aplastic anemia — restricted use). Symptoms (jaundice, dark urine, severe vomiting) → ED. | AST / ALT < 3× upper limit | Are my LFTs trending up? Any symptoms of hepatotoxicity? | [fill in] |
| HLA-B*15:02 (Asian descent + carbamazepine / oxcarbazepine / phenytoin / lamotrigine) | A genetic variant much more common in Han Chinese, Thai, Malay, Filipino, Indian populations. Strongly predicts SJS/TEN risk with carbamazepine (and increased risk with related agents). FDA recommends testing before starting these in patients of Asian descent. | Negative = lower SJS/TEN risk; positive = avoid these agents | If I am of Asian descent and considering carbamazepine / oxcarbazepine / phenytoin / lamotrigine — has HLA-B*15:02 been tested? | [fill in] |
| HLA-A*31:01 (carbamazepine in select populations) | Another HLA variant associated with carbamazepine hypersensitivity (rash, DRESS, SJS/TEN), more relevant in European, Japanese, Korean populations. Less universally tested than B*15:02 but considered in select cases. | Negative = lower hypersensitivity risk | Should HLA-A*31:01 testing be considered before carbamazepine? | [fill in] |
| Genetic testing in select cases | For developmental epilepsy syndromes, intellectual disability + epilepsy, drug-resistant childhood-onset epilepsy, family history, planning pregnancy. Common findings: SCN1A (Dravet), KCNQ2, SCN2A, STXBP1, CDKL5, tuberous sclerosis, GLUT1 deficiency. Genetic counseling first. | Variant identified or not | Should I be referred for genetic counseling and testing? | [fill in] |
| Vitamin D / DEXA (long-term enzyme-inducing AEDs) | Long-term enzyme-inducing AEDs (phenytoin, carbamazepine, phenobarbital, primidone, oxcarbazepine higher doses) increase osteoporosis risk via vitamin D metabolism effects. Vitamin D + calcium supplementation; periodic DEXA in long-term users. | Vit D > 30 ng/mL · DEXA T-score > -1.0 | Should I be on vitamin D / calcium? When was my last DEXA? | [fill in] |
| PHQ-9 / GAD-7 | Mood + anxiety screens. Depression / anxiety affect 30–50% of people with epilepsy. PHQ-9 0–27, GAD-7 0–21. Track monthly. FDA AED-suicidality warning is real but small (RR ~1.8); the answer is monitoring, not avoidance. | PHQ-9 <5 minimal · GAD-7 <5 minimal | Are my mood scores being tracked? Any concerning trend? Suicidal thoughts → 988. | [fill in] |
| Med list with epilepsy-aware review | NEVER stop AEDs abruptly — withdrawal seizures can be severe (status). SJS/TEN warning on lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital — ED for any new rash. Lamotrigine: never restart abruptly after >5-day pause. OC interactions: enzyme-inducing AEDs reduce hormonal contraceptive efficacy (carbamazepine, oxcarbazepine, phenytoin, phenobarbital, primidone, topiramate >200mg, perampanel >12mg, eslicarbazepine, rufinamide, felbamate). Pregnancy: avoid valproate (~10% malformation), avoid topiramate (cleft, IUGR); levetiracetam + lamotrigine preferred. | Med-by-med review with epilepsy-aware pharmacist or prescriber | Are my AEDs interacting with my contraception or other meds? Pregnancy planning? | [fill in] |
➕Add-On Modules & Earnable Badges
Stackable modules that match your situation. Complete one to earn an extra badge on your certificate. Your institution can add their own.
📋 Seizure Diary
The single highest-yield clinic-prep tool. Log every event: when, where, type, duration, triggers, recovery time, injury, post-ictal mood. Plot trends. Bring it to every neurology / epileptology visit.
🚨 Seizure First-Aid for Family + Community
STAY-SAFE-SIDE-NEVER-TALK-DIARY-911. Print for fridge. Train every family member, partner, roommate, classmate, coworker. Drill it. The Epilepsy Foundation has free training materials and posters.
💊 Rescue-Medication Plan (Nayzilam / Valtoco / Diastat)
For cluster seizures or seizure-prolongation risk: nasal midazolam (Nayzilam), nasal diazepam (Valtoco), rectal diazepam gel (Diastat), or buccal midazolam. Train family + caregivers in administration BEFORE you need it.
😴 Sleep-Deprivation-First Trigger Audit
Sleep deprivation is the #1 seizure trigger. 7–9 hours nightly. Sleep tracker / wearable. Address shift work, jet lag, late-night studying. Sleep hygiene + treat OSA if present.
👶 Pre-Pregnancy Folate + AED Selection Workshop
For women / people with childbearing potential. Folate 0.4–4 mg daily preconception. AED selection (avoid valproate, avoid topiramate; levetiracetam + lamotrigine preferred). North American AED Pregnancy Registry enrollment. Lamotrigine dose-up plan in pregnancy + post-partum dose-down.
🧬 HLA-B*15:02 Testing (Asian Descent)
Before starting carbamazepine / oxcarbazepine / phenytoin / lamotrigine in patients of Asian descent — HLA-B*15:02 testing strongly predicts SJS/TEN risk. FDA-recommended.
🚗 Driving Rules + DMV Conversation
State-specific 3–12 month seizure-free interval. Physician self-reporting mandatory in CA, DE, NJ, NV, OR, PA; voluntary in others. Your epilepsy team + DMV are your team — you don't navigate it alone.
📱 Seizure-Detection Wearable
Empatica Embrace, SmartWatch Inspyre, others — detect generalized tonic-clonic seizures, alert family. Especially valuable for nocturnal seizures (SUDEP risk reduction). Not perfect but useful adjunct.
🧠 Comprehensive Epilepsy Center Referral (2+ AEDs Failed)
The ILAE drug-resistant trigger. NAEC Level 4 centers offer presurgical workup (long-term video EEG, intracranial monitoring), epilepsy surgery, VNS / RNS / DBS, ketogenic diet program, clinical trials. Don't wait — earlier referral, better outcomes.
🥑 Ketogenic / Modified Atkins / Low-Glycemic-Index Diet
For drug-resistant epilepsy — especially pediatric (Dravet, LGS, infantile spasms, GLUT1 deficiency). Rigorous, monitored, dietitian-supervised. Modified Atkins and low-glycemic-index are less rigorous variants for adults.
⚡ Epilepsy Surgery / VNS / RNS / DBS Decision Workshop
When 2+ AEDs have failed. Resective surgery (temporal lobectomy is highest-yield), lesionectomy, corpus callosotomy, hemispherectomy. VNS (vagus). RNS (NeuroPace, focus-targeted). DBS (anterior thalamic nucleus, FDA 2018). Eligibility, expectations, prep.
🛡 SUDEP-Modifiable-Risks Plan
~1/1000 patient-years overall; nearly zero in seizure-free; up to ~1/100 in poorly-controlled GTC. Honest framing: adherence + GTC control + sleep + room sharing or bed alarm if nocturnal seizures + post-seizure prone-position avoidance. Knowing modifiable risks is empowering.
🏫 School 504 Plan / IEP + Teacher Seizure-First-Aid Training
For school-age kids with epilepsy. 504 / IEP for accommodations (rest after seizure, missed-work makeup, safe seating away from sharp corners). Teacher + school nurse seizure-action plan. The school is part of the team.
🧪 In an Epilepsy Clinical Trial?
Protocol literacy, side-effect tracking, when to call the study coordinator vs your usual epilepsy team. Trials enrolling in newer AEDs, gene therapies for genetic epilepsies (Dravet), neurostimulation, dietary therapies. Search ClinicalTrials.gov + AES + CURE Epilepsy + Epilepsy Foundation research portal.
+ Add Your Institution's Module
Drop in your own — local Epilepsy Foundation chapter, support group, faith-community partnership, employer wellness program, school nurse training program, anything.
🛡️Force Field Emergency Card
🛡️ Force Field Emergency Card FRIDGE · WALLET · EMT-READY
A one-page emergency record for any EMT, ER, new doctor, school nurse, or transition visit. Print one for the fridge, one for your wallet. Updates anytime. This is the document you hand to a stranger when you're postictal or someone else is helping during a seizure. Pair with the seizure-first-aid framework (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911) and your rescue-medication plan.
🤝 My Care Team — call list for any clinician picking up my care
📘My Health Passport
📘 My Health Passport PATIENT-OWNED JOURNAL
This is your record — not your hospital's. Log every visit, capture every question for next time, and watch your own trends. Many of you get care at more than one hospital, on more than one record system. This Passport travels with you. Future versions will let you import data directly from your patient portals (the "Blue Button" vision).
🩺Working With a Prepared Patient · Epilepsy
Your patient is going through a structured, evidence-based course. Here's how to get the most out of every visit, reduce avoidable ED utilization, support the Family Ambassador (the seizure-first-aid carrier), and partner well across the long epilepsy arc. Built on the AHRQ SHARE Approach, IOM teach-back, alignment with the Epilepsy Foundation, AES (American Epilepsy Society), CURE Epilepsy, NIH NINDS, AAN epilepsy guidelines, the ILAE 2014 definition + 2017 operational classification + 2017 etiology classification, the CDC SUDEP-awareness guidance, the North American AED Pregnancy Registry, and the FDA AED-and-suicidality warning. The Epilepsy Foundation 24/7 Helpline (1-800-332-1000) and the seizure-first-aid framework (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911) are surfaced throughout.
The SHARE Approach — your 5-step playbook
Use these steps in any order. Cycle back. Use teach-back at every transition. Source: AHRQ Pub. No. 25-0005 (Oct 2024).
💬Teach-Back & Risk Communication
The two highest-yield, lowest-cost SDM techniques. Use both at every visit.
🔁 Teach-Back (1–2 min)
- "Just so I know I explained it well — what would you tell your Family Ambassador about what to do if you have a seizure that lasts longer than 5 minutes? About when to call 911? About what to watch for if you get any new rash on lamotrigine?"
- Open-ended ("what" / "how"), not yes/no.
- If they get it wrong: "I must not have explained it well — let me try a different way." Then teach-back again.
- Use it for: seizure first-aid framework (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911); the status epilepticus 911 rule (>5 min or repeats); the SJS/TEN severe-rash rule on lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital; NEVER stop AEDs abruptly; the rescue-medication plan (Nayzilam / Valtoco / Diastat); state-specific driving rules; SUDEP modifiable risks; AED-OC interactions; pregnancy planning (folate, AED selection); when to call vs ED.
- Document teach-back in your note — it's a quality measure and a billable element of care.
🔢 Communicating Numbers
- Use absolute risk, not relative. "1 in 1000 patient-years" beats "0.1%" beats "uncommon" beats "low risk."
- Keep denominators & timeframes constant when comparing options.
- Show, don't tell: icon arrays, side-by-side AED option comparisons, written summary, seizure diary review.
- For SUDEP: "About 1 in 1000 people with epilepsy per year die suddenly without explanation. If you reach seizure freedom, that risk drops nearly to zero. If you have frequent generalized tonic-clonics, it can be as high as 1 in 100 per year. The biggest modifiable risks are medication adherence, controlling generalized tonic-clonics, sleep, and someone in the room or a bed alarm if your seizures are nocturnal."
- For seizure-freedom: "About 7 in 10 people reach seizure freedom on AEDs over time. The other 3 in 10 — drug-resistant epilepsy — have a real menu of next options: surgery, VNS, RNS, DBS, ketogenic diet."
- For pregnancy: "Valproate carries about a 10% major-malformation risk and about a 30% risk of IQ reduction in offspring — we avoid it in pregnancy if at all possible. Lamotrigine and levetiracetam are preferred. Lamotrigine levels drop in pregnancy — we'll dose up and check levels."
⚠️Epilepsy-Specific Clinical Guardrails
Diagnostic Workup & Classification
- ILAE 2014 definition of epilepsy: ≥2 unprovoked seizures >24 hr apart; OR 1 unprovoked seizure + ≥60% recurrence risk over the next 10 years; OR diagnosis of an epilepsy syndrome.
- ILAE 2017 operational classification: focal (with or without awareness; motor / non-motor; ± progression to bilateral tonic-clonic) / generalized (TC, absence, myoclonic, atonic, tonic, clonic) / combined / unknown.
- ILAE 2017 etiology classification: structural / genetic / infectious / metabolic / immune / unknown. Etiology drives prognosis and sometimes specific treatment.
- EEG: routine first; sleep-deprived EEG increases yield; ambulatory EEG for infrequent events; video EEG monitoring at a Comprehensive Epilepsy Center is the gold standard for atypical seizures, NEAD/PNES distinction, drug-resistant epilepsy, and presurgical evaluation.
- Brain MRI epilepsy protocol (thin temporal-lobe cuts) — finds hippocampal sclerosis, focal cortical dysplasia, tumors, vascular malformations, encephalomalacia missed on standard MRI.
- NEAD / PNES: real, non-stigmatizing diagnosis. Confirmed by video EEG. Treated with psychotherapy (CBT-based often), not AEDs. Some patients have BOTH epilepsy and NEAD — both need correct treatment.
- Genetic testing + genetic counseling for developmental epilepsy syndromes, ID + epilepsy, drug-resistant childhood epilepsy, family history, planning pregnancy. Common findings: SCN1A (Dravet), KCNQ2, SCN2A, STXBP1, CDKL5, tuberous sclerosis, GLUT1.
- HLA-B*15:02 testing before carbamazepine / oxcarbazepine / phenytoin / lamotrigine in patients of Asian descent.
- Always ask about driving status, pregnancy plans, mood, sleep, and adherence at every visit.
Evidence-Based AED Selection (by seizure type)
- Focal seizures: lamotrigine, levetiracetam, oxcarbazepine, lacosamide, brivaracetam, carbamazepine, eslicarbazepine, perampanel, cenobamate. (Gabapentin / pregabalin less effective.)
- Generalized tonic-clonic: lamotrigine, levetiracetam, valproate (high efficacy but pregnancy concerns), topiramate, perampanel.
- Absence: ethosuximide first-line; valproate or lamotrigine alternates.
- Myoclonic / JME: valproate (high efficacy), levetiracetam, lamotrigine (sometimes worsens).
- Atonic / drop: rufinamide, valproate, lamotrigine, felbamate (special).
- Lennox-Gastaut Syndrome: rufinamide, valproate, lamotrigine, felbamate (with monitoring), cannabidiol (Epidiolex), clobazam.
- Dravet Syndrome: valproate, clobazam, stiripentol, fenfluramine (Fintepla), cannabidiol (Epidiolex). Avoid sodium-channel blockers (carbamazepine, oxcarbazepine, lamotrigine) — worsen.
- Status epilepticus: IV lorazepam → IV fosphenytoin/phenytoin or levetiracetam or valproate → continuous infusion (midazolam, propofol, pentobarbital) if refractory.
The Epilepsy "NEVER" List — Patient + EMT + ER + School Nurse + Inpatient Nursing
- NEVER stop AEDs abruptly — withdrawal seizures can be severe (status). Even NPO patients need IV / NG / rectal alternatives.
- NEVER restart lamotrigine abruptly after a >5-day pause — must re-titrate slowly to avoid SJS/TEN risk.
- NEVER ignore a new rash on lamotrigine / carbamazepine / oxcarbazepine / phenytoin / phenobarbital — ED for SJS/TEN evaluation.
- NEVER use carbamazepine / oxcarbazepine / lamotrigine in Dravet syndrome — sodium-channel blockers worsen seizures.
- NEVER assume hormonal contraception is reliable with enzyme-inducing AEDs (carbamazepine, oxcarbazepine, phenytoin, phenobarbital, primidone, topiramate >200 mg, perampanel >12 mg, eslicarbazepine, rufinamide, felbamate).
- NEVER prescribe valproate to women / people of childbearing potential without explicit shared-decision-making about ~10% major-malformation risk and ~30% IQ-reduction risk; FDA Black Box.
- For seizures in the community: STAY-SAFE-SIDE-NEVER-TALK-DIARY-911. Do NOT put anything in mouth. Do NOT restrain.
Pregnancy Planning & Pregnancy
- Preconception folate 0.4–4 mg daily. North American AED Pregnancy Registry enrollment.
- Avoid valproate (~10% malformation, ~30% IQ reduction). Avoid topiramate (cleft, IUGR). Phenobarbital + phenytoin moderate teratogenicity. Carbamazepine intermediate (neural tube). Levetiracetam and lamotrigine generally preferred. Limited data on newer agents.
- Lamotrigine clearance increases dramatically in pregnancy — dose up by trimester with serial level monitoring; dose back down post-partum.
- Vitamin K in late pregnancy if on enzyme-inducing AED.
Monitoring & Follow-Up
- Seizure diary at every visit; PHQ-9 / GAD-7 monthly (30–50% mood prevalence; FDA AED-suicidality warning).
- Comprehensive Epilepsy Center referral when 2+ AEDs have failed (drug-resistant per ILAE definition).
- Surgery / VNS / RNS / DBS / dietary therapy discussion when appropriate. Anterior thalamic DBS FDA-approved 2018 for focal epilepsy.
- Bone density (DEXA) in long-term enzyme-inducing AED users; vitamin D + calcium supplementation.
- SUDEP discussion is owed to every patient — overall ~1/1000 patient-years; nearly zero in seizure-free; up to ~1/100 in poorly-controlled GTC. Modifiable: adherence, GTC control, sleep, room sharing or bed alarm if nocturnal.
- State-specific driving rules (3–12 month seizure-free interval; physician self-reporting mandatory in CA, DE, NJ, NV, OR, PA).
- Family seizure-first-aid training (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911) at diagnosis and refreshed periodically.
🌍Equity, Cultural Competence & Trust
Epilepsy has well-documented access gaps and stigma burdens across communities. African American, Latino, AAPI, Indigenous, LGBTQ+, rural, and lower-income patients have lower rates of epileptologist referral, lower epilepsy-surgery uptake, longer time-to-diagnosis, and disproportionate emergency-department reliance. Stigma in many cultures and faith traditions is severe — epilepsy framed as curse, possession, contagion, or character failure. Women / people of childbearing potential face complex AED-pregnancy decisions often made without their full participation. People of Asian descent face HLA-B*15:02 SJS/TEN risk on carbamazepine / oxcarbazepine / phenytoin / lamotrigine — testing is uneven. Children + school: 504/IEP access varies sharply by district. Adults seeking employment: stigma + driving rules limit options. Repair starts in your office.
- Use the ILAE 2014 definition + 2017 classifications as the standard. Don't undertreat; don't overtreat NEAD with AEDs.
- Plain framing: epilepsy is a brain condition — not a curse, not contagious, not mental illness, not character failure. ~70% reach seizure freedom on AEDs. The other 30% have a real menu of next-line options.
- Match the messenger when possible: peer mentors via the Epilepsy Foundation chapters, AES community, CURE Epilepsy. Culturally-affirming peer support reduces isolation and improves adherence.
- Use qualified medical interpreters — never family, never minor children. AED-pregnancy conversations, SUDEP conversations, surgery decisions, and the seizure-first-aid framework must be in the patient's primary language.
- HLA-B*15:02 testing in patients of Asian descent before carbamazepine / oxcarbazepine / phenytoin / lamotrigine — it is FDA-recommended and not optional based on cost convenience.
- Invite the Family Ambassador in with patient consent. The seizure-first-aid framework (STAY-SAFE-SIDE-NEVER-TALK-DIARY-911) is real medicine — every patient deserves a trained Ambassador.
- Telehealth closes rural and equity gaps for epileptology and Comprehensive Epilepsy Center access — advocate for parity coverage.
- School equity: 504 / IEP access; teacher seizure-first-aid training; school-nurse seizure action plans. Help the family navigate.
- Driving: state-specific rules (3–12 month seizure-free interval). Physician self-reporting is mandatory in CA, DE, NJ, NV, OR, PA — patients deserve to know how this works.
- Mood crisis resources: 988 (call or text), 741741 (text HOME), 988 then press 1 for veterans. Asking about suicide does not plant the idea. The FDA AED-suicidality warning is real but small — the answer is monitoring, not avoidance.
🏥Customize for Your Institution
Clone this course and replace the highlighted blocks with your own information. Each editable field below is a placeholder — change it once and it propagates through the patient view.
📞 What Should Replace the When-to-Call Block
- Epileptology / Neurology 24/7 on-call number / triage line
- Comprehensive Epilepsy Center referral line (NAEC Level 4 if accessible)
- Epilepsy Foundation 24/7 Helpline 1-800-332-1000 (Spanish 1-866-748-8008 · Text 38255)
- Epilepsy-aware pharmacy line (newer AEDs: brivaracetam, cenobamate, eslicarbazepine, Epidiolex, Fintepla)
- Neuropsychology + behavioral health + sleep medicine referral pathways
- Genetic counseling for select indications (Dravet, tuberous sclerosis, family history, pre-pregnancy)
- School-nurse / 504-IEP coordinator pathway for pediatric patients
- Mood crisis: 988 (call or text) · 741741 (text HOME) · 988 then press 1 Veterans
- Status epilepticus emergency criterion (>5 min or repeats without recovery) clearly stated → 911
- Patient portal login URL with Family Ambassador proxy
👤 Who Is Your Epilepsy Care Navigator?
- Name, role, photo, scheduling link.
- What teach-back / check-ins they own (seizure diary review, AED adherence, the SJS/TEN rash rule, the rescue-medication plan, the seizure-first-aid framework for the Family Ambassador, driving-status conversations, pre-pregnancy folate + AED selection if applicable, mood screens).
- How patients and Family Ambassadors reach them between visits.
- How they handle prior-auth navigation (cenobamate, brivaracetam, Epidiolex, Fintepla, VNS / RNS / DBS / surgery / ketogenic-diet program), copay help, and Comprehensive Epilepsy Center referral assistance.
📚 Add Your Own Modules
- Your clinical trial protocols (newer AEDs, gene therapies for genetic epilepsies, neurostimulation, dietary therapies — link to ClinicalTrials.gov + AES + CURE Epilepsy).
- Your epilepsy surgery / VNS / RNS / DBS / ketogenic-diet program — eligibility, prep, expected outcomes.
- Your video EEG monitoring (EMU) admission process and what to expect.
- Local peer support partners (Epilepsy Foundation chapter · AES community · CURE Epilepsy · Dravet Syndrome Foundation · LGS Foundation · Tuberous Sclerosis Alliance · faith-community partnerships).
🎨 Re-skin in 2 Lines of CSS
--inst-primary: your brand color- Replace the FFH × Epilepsy Foundation × AES × [Your Comprehensive Epilepsy Center] cobrand in the hero
- Drop in your logo PNG (white version) — same 48px height as FFH logo
📚 Evidence Base — what this course is built on
- AHRQ SHARE Approach — 5-step shared decision making framework. AHRQ Pub. 25-0005, Oct 2024. ahrq.gov/sdm
- AHRQ Health Literacy Universal Precautions Toolkit (3rd ed.) — teach-back, plain language, accessible materials. AHRQ Pub. 23-0075, March 2024.
- Epilepsy Foundation — patient education, peer mentor program, seizure-first-aid training, school-nurse resources, advocacy. 24/7 Helpline 1-800-332-1000 (Spanish 1-866-748-8008 · Text 38255). epilepsy.com
- AES · American Epilepsy Society — clinician education, guidelines, research community, patient-education hub. aesnet.org
- CURE Epilepsy — research funding, advocacy, family resources. cureepilepsy.org
- NIH NINDS · Epilepsy — comprehensive patient and clinician summaries.
- AAN epilepsy guidelines (American Academy of Neurology) — first-seizure management, AED selection, refractory-epilepsy referral, surgical evaluation, women's-health considerations.
- ILAE 2014 definition of epilepsy — ≥2 unprovoked seizures >24 hr apart; OR 1 unprovoked + ≥60% recurrence risk; OR diagnosis of an epilepsy syndrome.
- ILAE 2017 operational classification — focal / generalized / combined / unknown; with and without awareness; motor and non-motor sub-types.
- ILAE 2017 etiology classification — structural / genetic / infectious / metabolic / immune / unknown.
- CDC SUDEP awareness — overall risk ~1/1000 patient-years; nearly zero in seizure-free; up to ~1/100 in poorly-controlled GTC. Modifiable risks: AED adherence, GTC control, sleep, room sharing or bed alarm if nocturnal seizures, post-seizure prone-position avoidance.
- North American AED Pregnancy Registry — ongoing surveillance of teratogenic risk by AED. Patient enrollment encouraged. aedpregnancyregistry.org
- FDA AED-and-suicidality warning — pooled-analysis relative risk ~1.8; absolute risk small. Answer is monitoring, not avoidance. PHQ-9 / GAD-7 routinely; 988 surfaced.
- NAEC · National Association of Epilepsy Centers — Level 3 and Level 4 Comprehensive Epilepsy Center accreditation; presurgical workup, surgery, VNS / RNS / DBS, ketogenic diet program, clinical trials.
- Status epilepticus management — IV lorazepam → IV fosphenytoin/phenytoin or levetiracetam or valproate → continuous infusion if refractory. The >5-min-or-repeats-without-recovery 911 rule is universal.
- Anterior thalamic DBS for focal epilepsy — FDA-approved 2018, based on the SANTE trial.
- Ketogenic-diet evidence base — strong for pediatric Dravet, Lennox-Gastaut, infantile spasms, GLUT1 deficiency. Modified Atkins and low-glycemic-index diets as less rigorous adult variants.
- Dravet Syndrome Foundation · LGS Foundation · Tuberous Sclerosis Alliance — syndrome-specific patient and family resources.
- 988 Suicide & Crisis Lifeline — call or text 988, free, confidential, 24/7. Crisis Text Line: text HOME to 741741. Veterans Crisis Line: 988 then press 1. Epilepsy has 30–50% prevalence of depression / anxiety; mood crisis resources are surfaced.
- FFH Prepared Patient · Depression and Anxiety courses — bidirectionally cross-referenced from this Epilepsy course's Module 7 for the 30–50% mood-symptom prevalence in epilepsy.
- FFH Cluster Courses (HTN / T2D / CHF / CAD / post-MI / post-stroke / Alzheimer's / MS / brain tumor / cirrhosis / CKD) — the canonical comorbidity cluster module (md5 7587a559b24ca8b9bab40b1756475d84) is CROSS-REFERENCED from this Epilepsy course's Module 7, NOT embedded or modified. Epilepsy is not a cluster member; post-stroke epilepsy is a recognized cluster outcome.
- Force Field Fact Sheet · Epilepsy — the 16-square primer + seizure-first-aid centerpiece (companion file). This deep course extends and operationalizes the fact sheet.
Course content is educational and not a substitute for medical advice from your own clinicians. Institutions cloning this course are responsible for accuracy of all customized blocks.