Seizing Control: Living Fully with Epilepsy
Welcome to a Community of Resilience
Hello and welcome to “Seizing Control” – a safe harbor for anyone touched by epilepsy. Whether you’ve recently received a diagnosis, have been managing seizures for years, or love someone with epilepsy, you’ve found a space dedicated to education, empowerment, and genuine connection. Here, we replace fear with facts and isolation with community.
Understanding Epilepsy: More Than Just Seizures
Epilepsy is a neurological disorder characterized by recurrent, unprovoked seizures—but it’s also a spectrum of experiences. Approximately 1 in 26 people will develop epilepsy in their lifetime, making it one of the most common neurological conditions worldwide.
Key Facts to Know:
- Epilepsy is not contagious, not a mental illness, and not a single condition
- There are over 40 different types of seizures
- 65 million people worldwide live with epilepsy
- 1/3 of people with epilepsy have treatment-resistant forms
- Many people with epilepsy never experience tonic-clonic (convulsive) seizures
The Seizure Spectrum: Understanding Your Brain’s Electrical Landscape
Focal Seizures (Previously “Partial”)
Without impaired awareness: Strange sensations, emotions, or movements while fully conscious
With impaired awareness: The “absence” episodes where awareness is altered
Generalized Seizures
Absence: Brief lapses in awareness (formerly “petit mal”)
Tonic-Clonic: Convulsions with loss of consciousness (formerly “grand mal”)
Myoclonic: Sudden, brief jerks
Atonic: Sudden loss of muscle tone (“drop attacks”)
Modern Treatment Pathways: Beyond Medication
First-Line: Anti-Seizure Medications (ASMs)
Over 20 different ASMs are available today. Finding the right one(s) often requires patience and careful tracking. Newer generations generally have fewer side effects.
When Medications Aren’t Enough:
Surgical Options: Resective surgery, laser ablation, or responsive neurostimulation
Vagus Nerve Stimulation (VNS): A pacemaker-like device for the vagus nerve
Deep Brain Stimulation (DBS): For specific, hard-to-treat epilepsies
Ketogenic Diet: A medically supervised high-fat, low-carb diet particularly effective for some childhood epilepsies
CBD & Medical Cannabis: Emerging options for specific seizure types
Daily Life with Epilepsy: Practical Wisdom
Safety First: Seizure-Smart Your Environment
- Bathroom: Shower instead of a bath, use non-slip mats, install safety bars
- Kitchen: Use the microwave when possible, cook onthe back burners
- Bedroom: Consider low-profile beds, remove sharp edges
- General: Wear medical ID, create a seizure response plan
Seizure Tracking: Your Most Valuable Tool
Document:
- Date, time, and duration
- Warning signs (auras)
- Seizure description
- Recovery time
- Possible triggers
- Medications taken
Try apps like Epsy, SeizAlarm, or My Seizure Diary
Trigger Management: Know Your Personal Landscape
Common triggers include:
- Sleep deprivation (the #1 reported trigger)
- Stress and emotional upheaval
- Alcohol and recreational drugs
- Flashing lights (affects only 3-5% of people with epilepsy)
- Hormonal changes (catamenial epilepsy)
- Missed medications
- Specific sounds or patterns
Breaking Stigma: Changing the Conversation
What to Say (and Not Say) to Someone with Epilepsy
Instead of: “You don’t look like you have epilepsy.”
Try: “I’d like to understand your experience bette.r”
Instead of: “Have you tried [unsolicited treatment]?”
Try: “How can I support your treatment journey?”
Instead of: “Should you be doing that?”
Try: “What accommodations might help you feel safer?”
First Aid for Seizures: What Actually Helps
DO:
- Time the seizure
- Clear the area of hard/sharp objects
- Place something soft under the head
- Turn the person on their side after convulsions stop
- Stay with them until they are fully alert
DON’T:
- Put anything in their mouth
- Hold them down
- Give water/pills until fully alert
- Perform CPR (unless not breathing after the seizure stops)
Special Considerations Through Life Stages
Childhood & Education
504 Plans & IEPs can provide classroom accommodations
Sports participation is usually encouraged with proper precautions
Pregnancy & Family Planning
Most women with epilepsy have healthy pregnancies with proper planning
Preconception counseling is crucial for medication adjustments
Aging with Epilepsy
Seizure patterns may change with age
Medication interactions become more complex with other age-related medications
Research Horizons: Hope on the Horizon
The epilepsy research landscape is vibrant with potential:
- Gene therapies targeting specific genetic epilepsies
- Seizure prediction devices using AI algorithms
- New medication targets beyond traditional mechanisms
- Closed-loop systems that detect and stop seizures automatically
Your Stories: The Heart of Our Community
This Month’s Spotlight: “Finding My Voice After Diagnosis” – Maria shares her journey from fear to advocacy after being diagnosed at 32.
Caregiver Corner: Practical self-care strategies for those supporting loved ones with epilepsy.
Youth Perspective: College student Alex discusses navigating dorm life and classes with recent-onset epilepsy.
Connect & Advocate
National Resources:
- Epilepsy Foundation (epilepsy.com)
- CURE Epilepsy (cureepilepsy.org)
- International League Against Epilepsy (ilae.org)
Get Involved:
- Purple Day – March 26th
- National Epilepsy Awareness Month – November
- Local support groups and advocacy days
Next Week: We’re exploring “The Invisible Load: Managing Mental Health with Epilepsy” – addressing anxiety, depression, and the emotional landscape of chronic neurological conditions.
Remember: You are not your diagnosis. You are a person who happens to have epilepsy. Your journey is unique, your resilience is remarkable, and your community is here.