Feature article: Disaster Preparedness for Individuals with Epilepsy and Seizures
Disasters—whether natural events like hurricanes and earthquakes or man-made crises—can occur quite suddenly and turn everyday life upside down. For people living with epilepsy or who experience seizures, these situations bring added challenges that require thoughtful preparation.
This guide provides practical steps to help individuals with epilepsy, along with their caregivers and loved ones, get ready for emergencies, know how to respond, and recover afterward as well as possible.
Getting started
First and foremost, individuals living with seizures need to ensure uninterrupted access to anti-seizure medications (ASMs). Disruptions to pharmacies, roads, or healthcare services can quickly make refills impossible, so having a reliable supply on hand is essential. Equally important is carrying up-to-date medical information, including your history, current medications, allergies, and emergency contacts—this becomes vital if you're separated from family or treated by providers who don't know your background. Disasters often bring stress, sleep deprivation, dehydration, and disrupted routines, all of which can trigger more frequent or severe seizures, so having strategies to manage them in chaotic settings is key. Finally, the post-disaster environment—filled with debris, uneven ground, or hazards—raises the risk of injury from falls or accidents during a seizure.
Getting Prepared Before a Disaster Strikes
Start by creating a personalized disaster plan tailored to your needs. List key emergency contacts, such as family, close friends, your neurologist, and local emergency services, and store copies in easy-to-reach places like your wallet, phone, and emergency kit. Decide in advance how you'll stay in touch if separated—perhaps by naming an out-of-state contact everyone can call or agreeing on a meeting spot. Map out primary and backup evacuation routes from home and work, and look into nearby shelters to see which ones can handle medical needs, such as quiet areas or power for devices. If you depend on caregivers, make sure they have detailed, written instructions for seizure first aid, giving rescue medications, and handling emergencies.
Next, put together an emergency "go-bag" that's easy to grab and ready to sustain you for at least 72 hours—ideally a full week or more. The absolute priorities are your medications (kept in a waterproof bag) and a personalized Seizure Action Plan (a document that outlines your seizure types and rescue steps- download About the Seizure Action Plan Coalition - Seizure Action Plans). Keep at least a seven-day supply of all prescribed anti-seizure medications in their original labeled containers, along with any rescue therapies like nasal sprays or rectal gels (such as midazolam or diazepam), complete with clear instructions and checked expiration dates. For medications that need refrigeration, pack a small portable cooler or ice packs. Include copies of prescriptions (with names, dosages, and doctor contacts), a concise medical history summary (diagnosis, seizure types, typical frequency, and triggers), allergy information, contacts for your neurologist, primary doctor, and pharmacy, plus insurance details. Add a basic first-aid kit with bandages, antiseptic wipes, and pain relievers, non-perishable food, plenty of bottled water, hygiene essentials like soap and hand sanitizer, a change of comfortable clothing suited to the weather, a flashlight with spare batteries, a battery-powered radio, a power bank for charging devices (especially important for backup power during outages if you use medical tech), and important documents in a waterproof bag. Comfort items like a small blanket or pillow to help reduce stress and encourage rest. Also make sure to have some cash in small bills (since ATMs and cards may not work), and a medical alert bracelet or necklace. A thermometer can also be useful in some cases.
To make your home safer, take time to identify and secure anything that could topple or cause injury in strong winds, shaking, or chaos—think bookshelves, heavy objects, or loose items. Store extra water, non-perishable food, and a basic first-aid kit in an accessible spot. If you rely on a generator, learn how to use it safely with proper ventilation to avoid carbon monoxide risks.
Don't overlook educating those around you. Teach family, friends, neighbors, and coworkers how to recognize your seizures and provide first aid. Share your Seizure Action Plan with schools, workplaces, or anyone who might need to assist you.
Responding During a Disaster
When an emergency unfolds, focus first on staying calm and safe. Follow instructions from local authorities—whether that's evacuating or sheltering in place—and keep your go-bag nearby at all times.
If a seizure happens, use standard first aid: Stay with the person and remain calm, keep them safe by clearing hazards or gently guiding them away from danger, time the seizure, turn them onto their side (recovery position) once any convulsing stops to help keep the airway clear, and never put anything in their mouth or hold them down. Offer comfort and reassurance once they're alert again. Call emergency services (911) if the seizure lasts longer than five minutes, if another starts without full recovery, if there's injury, breathing trouble, or if it's different from their usual pattern.
Try hard to stick to your normal medication schedule despite the upheaval. If supplies run very low and refills seem uncertain, reach out to a healthcare professional for advice on adjustments rather than changing doses on your own.
Recovering After the Disaster
Once the immediate danger passes, prioritize safety—make sure your surroundings are secured before heading back home or resuming routines. Check your remaining medications and supplies right away.
Reconnect with your healthcare team as soon as communications allow: contact your neurologist to review any concerns, medication needs, or recent seizure activity. Find open pharmacies (tools like RxOpen.org can help) and bring your prescription copies and medical summary to speed up refills.
Reach out to local epilepsy support groups, foundations or Epilepsy Alliance America—they often help access resources, provide medication assistance, or emotional support during recovery.
Disasters take a heavy emotional toll, and the added stress, anxiety, or trauma can worsen seizures or trigger mood changes common in epilepsy. Reach out to mental health professionals, family, or friends for support and to process what happened, and work toward re-establishing a steady sleep schedule and daily routine to regain control.
Last but not least, if you have a service animal—such as a seizure alert or response dog—include all necessary supplies for their care in your emergency kit: food, water, medications if any, waste bags, identification, and any gear they need to perform their tasks safely during and after the disaster. This ensures both you and your animal stay protected and supported.
No one hopes to experience a disaster but being prepared can go a very long way in helping you make it through the event safely and to recover as quickly as possible. We hope these recommendations come in handy.
