Tips for Traveling Safely With Epilepsy
d3sign / Getty Images
Medically reviewed by Forest Miller, MSOT, OTR/L
People with epilepsy can and do travel using every mode of transportation. However, it may require extra planning, such as ensuring you have enough medication and requesting accommodations if needed. This article will discuss the challenges of traveling with epilepsy, how to prepare, and how to make your trip go smoothly.
d3sign / Getty Images
Can You Travel With Epilepsy?
Some considerations may need to be taken, such as places to avoid or safety measures to take, but most people with epilepsy can travel just fine.
Preparing for Your Trip
If you have epilepsy and plan to travel, it's important to prepare for your trip ahead of time to make sure you have everything you need and are ready for any unexpected difficulties.
Talk to Your Healthcare Provider
If you have enough notice, talk to your healthcare provider at least two months before your trip.
Things to discuss with your healthcare provider include:
If your intended destination is safe for you
What medications you need to bring, and how much
What your dosing schedule should be, particularly if you are changing time zones
What to do if you miss a dose of your medication
Required vaccinations and if they may impact your seizure activity and/or your medication
How to prevent sleep deprivation if you are changing time zones
Requesting documents from your healthcare provider if necessary
Any other questions or concerns you may have
Important Documents
Which documents you will need to bring depends on your mode of transportation, the company with whom you are traveling, where you are going, and specifics about your condition. It's worth contacting the company to inform them of your condition and ask what they recommend.
It's also important to check what you will need to get through customs if you are changing countries.
Some documents that may be helpful include:
A letter from your healthcare provider with information about your condition, medication, implanted medical devices (if applicable)
Epilepsy ID, such as a card or medical bracelet that can explain your seizures to others in the language spoken at your destination (Epilepsy Action has "I have epilepsy" flashcards in multiple languages you can download and print)
A copy of your epilepsy management plan and your emergency medication plan (if necessary)
A contact list that includes information for your healthcare provider(s), pharmacist, emergency family contact who knows your medical history, and a local pharmacy and hospital at your destination
Copies of important items such as your passport, credit cards, and emergency contact numbers (leave a copy with someone at home, and store the copies away from the originals)
A copy of your itinerary to give to a friend or family member (make sure to stay in regular contact with at least one person)
Medication
Things to keep in mind when traveling with medication include:
Keep your medication on you at all times, including putting it in your carry-on luggage.
Make sure your medication is protected from extreme heat or cold, preferably in a temperature-controlled compartment.
Plan to handle time differences to ensure you take your medication correctly in a new time zone.
Bring enough extra medication to cover your entire trip in case of travel delays or other complications.
Keep medication in its original packaging, which shows the name of the medication, the current dosage, and that it has been prescribed to you.
Bring copies of your prescriptions in case you need refills or replacements.
Check if your medications are available where you will be staying, and if there are any differences you need to know about.
Check that your medications can be brought into the country you are traveling to and if any paperwork or documentation will be needed.
Store a supply of medications in more than one place (such as one supply in a carry-on and one in baggage) in case one supply gets lost.
Requesting Accommodations
If you need accommodations, try to inform the company or venue ahead of time, preferably at the time of reservation.
Some accommodations you may need or find beneficial include:
Mobility aids or assistance, particularly for moving long distances in airports or for avoiding the stress of rushing to catch a connecting flight
Accessibility features at your hotel, such as ramps and/or safe shower access
Help moving sharp objects or furniture that could injure you if you have a seizure
An aisle or bulkhead seat, which can provide more room and access if you have a seizure
The Transportation Security Administration (TSA) has rules for traveling with medication. You can read about the rules in detail on their website.
Some highlights include:
Medication must undergo security screening.
Inform the TSA officer of any medically necessary liquids or medications and any accessories used for your medication.
Some medically necessary liquids may be exempt from the 3-1-1 liquids rule under certain conditions.
Can You Fly With Epilepsy?
Most people with epilepsy can travel by plane, but the Aerospace Medical Association recommends that people who have uncontrolled seizures avoid commercial air travel, particularly long flights. This is because there may not be adequate medical help available while in the air.
Also, with it being a confined space, the safety of the person and the other passengers could be put at risk if the person experiences confusion or behavior changes during or after a seizure.
When traveling by plane if you have epilepsy:
Talk to your healthcare provider before you travel to discuss the impact air travel may have on your seizures, how to minimize your risk of seizure on a flight, and what to do if a seizure occurs.
Consider traveling with a companion who knows what to do if you have a seizure.
Bring a letter from your healthcare provider outlining your ability to travel by plane (usually not required but can be helpful).
Have your completed seizure action plan on you describing what to do if you have a seizure.
Try to book in advance so you can request special seating arrangements, such as sitting near the front where you can get help if you need it or having an empty seat beside you so you can lie down if you have a seizure.
Have your medication accessible to you during your flight.
If you have a vagus nerve stimulation (VNS) device, make sure to inform airport security staff. The security scanners and metal detectors used by airport security shouldn't interfere with your VNS, but the VNS makers recommend walking through the airport scanners at a steady pace, not lingering in the area, and trying to stay a minimum of 40 centimeters (15.8 inches) away from the equipment.
If you are concerned about your VNS, or if these considerations can't be met, you can request a pat-down check instead. A handheld metal detector should not be used directly over your VNS.
The Air Carrier Access Act (ACAA) prohibits airlines from asking if a person has a disability or refusing them travel because of their disability, unless the pilot reasonably believes a person's seizure disorder or disability poses a real safety risk to the pilot or other passengers, and reasonable accommodation does not eliminate this risk.
In most cases, a pilot cannot require a medical certificate from a healthcare provider certifying that it is safe for a person to fly.
Can People With Epilepsy Drive?
If you are planning to be the driver on your road trip, check the regulations about driving for people who experience seizures in the places you will be traveling to and through. These regulations can vary by state and by country.
You should also discuss your plans with your healthcare provider ahead of time to ensure it is safe for you to drive.
If you are driving:
Take frequent breaks
Don't drive if you have missed any medication, are overtired, or are at an increased risk of seizures for any reason.
If you are photosensitive (sensitive to flashing lights), avoid driving at night, particularly on the highway, as headlights can cause a flashing effect.
Traveling by Train or Bus
Trains and buses can be a great option for people with epilepsy, particularly if you can't drive or fly. They also make help more easily accessible if you have a seizure.
When traveling by train or bus:
Be careful on train platforms, especially if you wander during a seizure or are at risk for falls (have someone with you while waiting on the platform to avoid falling or wandering onto the tracks).
Tell your driver or the staff on the train about your condition and what to do if you have a seizure.
Planning for Seizure Triggers
Traveling may increase exposure to seizure triggers. Planning for triggers may include:
Make plans to avoid overheating (such as bringing extra water).
Consider what the climate is like that time of year where you are going, especially if you are sensitive to hot or cold weather.
Plan how you will get enough good quality sleep, especially if changing time zones (such as planned rests, planning to arrive at your destination in the evening closer to bedtime, having a stop-over instead of a long, continuous flight, etc.).
Consider using a travel agent.
Be mindful of the foods you eat (ask restaurant staff about food ingredients if certain foods are triggers for you).
Ensure that you are eating regularly and don't experience a blood sugar drop.
If you are on a special diet, such as the ketogenic diet, ensure you will have proper storage and preparation accommodations for your food.
Avoid or limit alcohol.
If you are unsure of the safety of the water in your destination, drink and use only bottled water, including for brushing your teeth (illness or gastric upset can affect the absorption of your medication and/or increase your risk of seizures).
If you are photosensitive, avoid amusement parks, casinos, and other places with flashing lights and neon signs.
Have a hospital bag packed should you have an emergency that requires hospitalization.
Insurance and Health Care
Make sure you know where and how to seek medical care where you will be staying.
Travel insurance is highly recommended. When choosing travel insurance:
Look for a plan that allows you to seek medical care.
Be honest and accurate about your condition (failing to do so could mean refusal to pay out if you need seizure treatment abroad).
Plan in advance, as many travel insurance companies have requirements such as no changes to medication and/or no hospital admissions in the past 12 to 24 months.
Summary
Having epilepsy usually does not prevent a person from traveling. Considerations may need to be taken when planning your trip, such as how well your seizures are controlled, accommodations that may need to be made, and triggers you may encounter.
Careful planning ahead of time, like bringing proper documents, ensuring you have enough medication, and acquiring travel insurance, can make for a smoother trip. In addition, always talk to your healthcare provider about your upcoming travel plans.
Frequently Asked Questions
Does flying trigger seizures?
There is conflicting evidence on whether flying increases the chances of seizures. However, it's possible that factors related to flying, such as stress and anxiety, fear of flying, sleep disruption, or disruption to biological rhythms with long flights, could increase the risk of seizures.
The Epilepsy Foundation states no medical evidence shows flying increases the risk of seizures.
What happens if you have a seizure on an airplane?
It's best to travel with someone who knows seizure first aid. They can help you lie down on your side across seats, arrange pillows or blankets to protect your head, monitor you during and after your seizure, and take other safety measures.
If the seizure lasts longer than five minutes or is quickly followed by another seizure, the flight staff should be notified of a medical emergency and follow protocols for emergency medical care.
Do you have to declare epilepsy to travel insurance?
It's important to be honest and accurate about your condition when seeking travel insurance. Not doing so may invalidate your policy and mean you do not receive needed pay-outs.
