🚨 Emergency: Read This First
When to call emergency services immediately
Call 108 RIGHT NOW if:
Call Now- ⏱️ Seizure lasts more than 5 minutes CRITICAL
This is a medical emergency called status epilepticus - 🔄 Another seizure starts before the person fully recovers
- 💨 Trouble breathing after the seizure ends
- 💧 Seizure happened in water
- 🤕 Person was injured during the seizure
- 🤰 Person is pregnant
- 🩺 Person has diabetes
- 🌡️ Adult has seizure with fever — Could indicate brain infection
- 🆕 This is their FIRST seizure ever Needs evaluation
- 🧠 Severe headache before or after — Could indicate bleeding
- 💪 New weakness on one side that doesn't resolve — Could be stroke
- 😵 Not waking up or confused for more than an hour
Why the 5-minute rule matters
After 5 minutes, the brain may have difficulty stopping the seizure on its own. Medication can help stop it. Every minute beyond 5 increases risk of complications.
What Just Happened?
Understanding what you witnessed
What You May Have Seen
You may have seen your loved one suddenly:
- Go stiff and fall (the "tonic" phase)
- Start shaking rhythmically (the "clonic" phase)
- Make strange sounds (air forced past vocal cords — NOT choking)
- Turn blue around the lips (breathing pauses temporarily)
- Drool or foam at the mouth
- Lose bladder control
What It Feels Like for Them
Most people remember nothing of the actual seizure. Some have a warning feeling beforehand (called an "aura"):
- Strange smells or tastes
- A rising feeling in the stomach
- Déjà vu
- Tingling sensations
- Sudden fear or anxiety
After waking, they typically feel confused, exhausted, sore, headachy, and sometimes embarrassed or scared.
One Seizure Is NOT Epilepsy
Epilepsy is defined as having 2 or more unprovoked seizures at least 24 hours apart. A single seizure, especially one with an identifiable trigger, does not mean epilepsy.
Many people have one seizure and never have another.
Types of Seizures
Understanding the type helps doctors plan treatment. Here are the most common types:
Tonic-Clonic
(Grand Mal)Stiffening → rhythmic jerking → unconsciousness → confusion
Absence
(Petit Mal)Brief staring (5-30 seconds), common in children, may blink rapidly
Focal Aware
Tingling, jerking of one limb, strange sensations — person is aware
Focal Impaired
Staring, lip smacking, picking at clothes — person seems "out of it"
Myoclonic
Quick jerks, like being startled, often in the morning
Atonic
(Drop)Sudden loss of muscle tone → person collapses
🩹 First Aid: What to Do
During and after a seizure
The most important things: Stay calm, time the seizure, and keep them safe. You cannot stop a seizure, but you can help.
✅ DO These Things
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1
Stay calm Your calm presence helps everyone around you
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2
Time the seizure This is the most important thing you can do
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3
Keep them safe Clear away furniture, sharp objects, glasses
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4
Ease them to the ground If they're standing, help them down gently
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5
Protect their head Place something soft underneath
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6
Loosen tight clothing Especially around the neck
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7
Stay with them Don't leave them alone until fully recovered
-
8
AFTER convulsions stop Gently roll onto side (recovery position)
❌ DO NOT Do These
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Put anything in their mouth MYTH: They CANNOT swallow their tongue
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Hold them down You won't stop the seizure and might cause injury
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Give CPR during seizure They're breathing, even if it looks irregular
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Give food or water Wait until they're fully awake and alert
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Throw water on them
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Shout or try to wake them They can't hear you during the seizure
Important: Recovery Position Timing
Don't try to force someone onto their side during active convulsions — you'll fight against rigid muscles and risk injury. Wait until the jerking stops, THEN roll them gently onto their side.
When It Ends: What to Say
They'll be confused and scared. Use a calm, reassuring voice:
📋 The First 48 Hours
A practical checklist to guide you through the next two days
🏠 Immediate (First 24 Hours)
Home Safety:
- Don't leave the person alone
- Sleep in same room or use baby monitor
- Remove sharp objects from bedside
- No bathing alone — showers only, door unlocked
- No cooking unattended
- No swimming
- No driving
Medical:
- Go to ER if you haven't already
- Get copies of all ER paperwork
- Understand what medications were given
- Write down everything about the seizure
📅 Day 2 and Beyond
Schedule Appointments:
- Call primary care doctor Monday morning
- Request neurology referral (within 1-2 weeks)
- Ask about expedited EEG (ideally within 72 hours)
- Discuss MRI timing with your doctor
Documentation:
- Start a seizure diary
- List all current medications
- Note family history of seizures
- Prepare questions for neurologist
Your Progress
0 of 0 completedReturn to ER Immediately If:
🏥 The Medical Journey
Understanding tests, treatment, and next steps
ER Visit
Immediate evaluation
Follow-up
Primary care
Specialist
Neurologist visit
Testing
EEG & MRI
Plan
Treatment decision
Understanding Your ER Visit
The ER's job was to:
- Make sure you weren't dying — Rule out stroke, bleeding, serious infection
- Stabilize you — Treat any immediate dangers
- Start the investigation — Initial blood tests, possibly CT scan
The Full Workup
Blood Tests
Looking for treatable causes:
- Blood sugar levels
- Electrolytes (sodium, potassium)
- Kidney & liver function
- Thyroid function
- Inflammatory markers
EEG (Brain Waves)
Electrodes record brain electrical activity. Shows epileptic patterns.
MRI (Brain Pictures)
Detailed brain imaging. Shows:
- Scars from injury
- Malformations
- Tumors
- Stroke damage
More detailed than CT scan
Risk of Another Seizure
After a first unprovoked seizure:
Higher Risk If:
- Abnormal EEG
- Abnormal MRI
- Seizure during sleep
- Focal seizure that spread
- Family history of epilepsy
Lower Risk If:
- Normal EEG
- Normal MRI
- Clear provoked cause (e.g., lack of sleep)
- Quick recovery after seizure
Common Medications
If medication is recommended, here's what you might be prescribed:
Levetiracetam
(Keppra)Often the first choice for adults. Generally well-tolerated.
Lamotrigine
(Lamictal)Requires slow dose increase over several weeks.
Valproate
(Depakote)Effective but has significant considerations.
Carbamazepine
(Tegretol)Good for focal seizures. Established track record.
Critical Medication Rules
📝 Questions to Ask Your Neurologist
🌟 Living Life
Emotions, driving, work, and daily life
The Emotional Journey
What you might be feeling — and it's ALL valid:
Healthy Coping Strategies
Driving
This is often the hardest part. Losing driving means losing independence.
The reality: You cannot drive immediately after a seizure. The rules vary by location:
- Seizure-free period required (3-12 months depending on location)
- May need to report to licensing authority
- Your doctor can advise on local requirements
Work
You're NOT required to disclose unless your job involves safety-critical activities (operating heavy machinery, driving, etc.).
Sample Script for Colleagues:
"I recently had a medical event and am under specialist care. I may need flexibility for appointments. If you ever see me have a medical episode, here's what to do..."
Many countries have laws protecting people with medical conditions from workplace discrimination.
Sleep
#1 PrioritySleep deprivation is the #1 modifiable risk factor. One all-nighter can trigger a seizure.
- Get 7-8 hours consistently
- Same bedtime even on weekends
- No caffeine after noon
- Limit screen time before bed
Alcohol
Alcohol lowers seizure threshold. Withdrawal is even more dangerous than drinking.
- Avoid binge drinking completely
- Interacts with many medications
- Talk to your neurologist about safe limits
Exercise
Exercise is generally encouraged and safe with some precautions:
- ✅ Most sports are fine
- ⚠️ Swimming: never alone, inform lifeguard
- ⚠️ Heights: use extra caution
- 🔴 Avoid: scuba diving, solo water activities
📔 Track Your Triggers
Keeping a diary can help identify patterns. Common triggers include:
👩 Women's Health
Important considerations for women with seizures
Contraception Warning
Some seizure medications reduce birth control effectiveness:
Pregnancy: Plan Ahead
Valproate has HIGH risk of birth defects — women of childbearing age should generally NOT be on it unless no other options exist.
If thinking about pregnancy:
- Talk to neurologist BEFORE getting pregnant — ideally 6+ months ahead
- May need to switch medications to safer options
- High-dose folic acid (4-5mg) usually recommended
- More frequent monitoring during pregnancy
👶 Children & Seizures
For terrified parents: Take a breath. Children do remarkably well.
Febrile Seizures: Complete Guide for Parents
Your child had a seizure triggered by fever. This is called a febrile seizure. You probably thought they were dying. They're not. They're going to be okay.
💜 What You Did NOT Do Wrong:
- Fever medications do NOT prevent febrile seizures reliably
- You cannot "catch" a fever fast enough — seizures often happen as fever is RISING
- There was nothing you could have done differently
- This is NOT your fault. Not even a little bit.
Simple vs Complex Febrile Seizures
| Feature | Simple (More Common) | Complex (Less Common) |
|---|---|---|
| Duration | Less than 15 minutes | More than 15 minutes |
| Movement | Whole body | May be one-sided |
| Recovery | Quick (within 1 hour) | May take longer |
| Recurrence in 24h | No | May occur |
| Outcome | Excellent | Usually excellent |
Age-Specific Guidance
Infants (0-12 months)
- Febrile seizures rare before 6 months — needs thorough workup
- Seizures may look subtle: lip smacking, eye deviation, bicycling movements
- Always needs urgent evaluation
Toddlers (1-5 years)
- Peak febrile seizure age (6 months to 5 years)
- Breath-holding spells are NOT seizures (common, scary, but harmless)
- Absence seizures may begin (staring spells)
School-Age (6-12 years)
- Childhood Absence Epilepsy peaks at ages 6-7
- Teachers may notice "spacing out" in class
- Most children do well academically
- Sports participation usually fine with precautions
Teens (13-18 years)
- Juvenile Myoclonic Epilepsy common (morning jerks)
- Sleep deprivation trigger (exams, gaming, phones)
- Driving concerns and questions
- Medication compliance challenges
- Dating and disclosure conversations
School Considerations
Who to Inform:
- Classroom teacher(s)
- School nurse/health coordinator
- PE teacher/sports coaches
- Bus driver (if applicable)
- After-school program staff
What to Provide:
- Seizure Action Plan (signed by doctor)
- Description of what their seizures look like
- Clear guidelines for when to call 911
- Multiple emergency contacts
- Medication information if applicable
📝 School Letter Template
We recommend preparing a one-page information sheet for school staff. Include your child's photo, description of their seizures, and step-by-step instructions.
🎯 Activities Permission Guide
💜 Your Child Will:
SUDEP: An Honest Conversation
What families searching at 3am need to know
If you're not ready for this section, it's okay to skip ahead.
We debated whether to include this section. It's scary. But families searching will find this information anyway, and we'd rather you hear it with proper context than from a frightening headline.
What Is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy. It's when a person with epilepsy dies suddenly without a clear cause.
How Common Is It?
For perspective: You're statistically more likely to die in a car accident. But because SUDEP is potentially preventable with good seizure control, we discuss it.
How to Reduce Risk
- Take medication as prescribed — This is the single most important thing
- Never stop medication abruptly without doctor supervision
- Work with your doctor toward the best possible seizure control
- Consider nighttime monitoring if having nocturnal (sleep) seizures
- Regular check-ins with family/friends if living alone
- Avoid known triggers (especially sleep deprivation)
💜 For Caregivers & Families
You've been through something traumatic too
For the Person Who Witnessed the Seizure
Watching someone you love have a seizure is traumatic. You saw something terrifying. You felt helpless. You might not be sleeping. You might be hypervigilant, watching them constantly.
This is not weakness. This is a normal response to trauma.
Taking Care of Yourself:
- 🗣️ Talk to someone about what you witnessed — a friend, family member, or counselor
- 🧠 Consider counseling if you're having intrusive thoughts or nightmares
- 👥 Join a caregiver support group (online ones are available 24/7)
- 🏃 Take care of your own physical health
- 🤝 Accept help when it's offered — you can't pour from an empty cup
- ⏰ Schedule breaks — caregiver burnout is real
Signs of Caregiver Burnout:
If you recognize these signs, please seek support. Your wellbeing matters too.
Living Alone Safety Tips
Technology Helpers:
- Medical alert bracelet (wear it always)
- Emergency contacts on phone lock screen
- Seizure alert apps and devices
- Smart watch with fall detection
- Regular daily check-in calls with someone
Home Safety Modifications:
- Non-slip mats in bathroom and kitchen
- Showers instead of baths
- Low bed or mattress on floor initially
- No locks on bathroom doors (or use emergency release)
- Padding on sharp furniture corners
- Microwave preferred over stovetop
💜 Resources & Support
You don't have to do this alone
Organizations
- Epilepsy Foundation epilepsy.com
- ILAE ilae.org
- Indian Epilepsy Association ieaindia.org
- Epilepsy Society (UK) epilepsysociety.org.uk
Communities
- Facebook epilepsy support groups
- Reddit r/Epilepsy (active, supportive community)
- MyEpilepsyTeam
- Local hospital support groups
- Epilepsy Foundation forums
Helpful Apps
- Seizure Diary Apps Track seizures, triggers, medications
- Medication Reminders Never miss a dose
- Seizure Alert Apps Notify contacts during seizures
Seizure Action Plan Template
Create this with your doctor and share with family, caregivers, school, workplace.
👤 Personal Information
Name, photo, date of birth, medical ID number
📞 Emergency Contacts
Name, relationship, phone number (2-3 contacts)
⚡ About My Seizures
Type, what they look like, typical duration, warning signs, known triggers
🩹 During a Seizure
Specific instructions for what to do (and what NOT to do)
🚨 Call 108 If
Specific criteria for your situation (e.g., lasts more than X minutes)
💊 Medications
Current medications, doses, timing, emergency medications if prescribed
💳 Wallet Emergency Card
Consider carrying a card with key information:
You're Going to Be Okay
Seizures are part of some people's lives. They do not have to be the center of anyone's life.
You've got this. And you're not alone.