Traveling with Epilepsy Can Be Challenging, But It's Not Unmanageable

Waking up in the lobby of a trendy Shoreditch hotel, tasting blood and surrounded by shocked onlookers, is far from the ideal vacation kickoff. Similarly, regaining consciousness in a Portuguese hospital after unknowingly trekking for hours can be just as unsettling. These scenarios reflect the harsh realities that travelers with epilepsy may face, and they are experiences I have personally endured.

Approximately 1 percent of the population lives with epilepsy, and many know firsthand that answers are scarce. My first seizure went unnoticed by anyone, and I woke up in Denmark, disoriented and in pain. Since then, I’ve experienced seizures in at least six different countries. As a travel writer, the question looms: should I stop pursuing my passion?

While the previous accounts may seem discouraging, there are numerous strategies to facilitate travel for those with epilepsy. Always consult your physician before embarking on a trip or altering your treatment plan.

Be sure to pack additional medication

“When discussing an upcoming trip with my patients who have epilepsy, ensuring they have enough medication is a top priority,” says neurologist Dr. Emily Johnson, an adult epilepsy specialist at Johns Hopkins. For extended international travel, she recommends obtaining at least a 90-day supply. “Patients may need to request an early refill from their pharmacist to ensure they have enough medication while abroad.” Navigating insurance companies, pharmacy chains, and busy neurologists can lead to delays, so it’s wise to plan ahead.

Also, check with your neurologist about the possibility of using fast-acting rescue medications. “If you sense a seizure coming on or experience a seizure aura, there are various formulations available, including nasal sprays, that can potentially halt it,” she advises.

Be mindful of time zone adjustments

Shifting time zones can interfere with your medication regimen, so Dr. Johnson emphasizes the importance of planning. She recommends adjusting your medication schedule by about an hour each day until you align with your usual intake times. “We need to consider when medications will be taken during travel and their final destination,” she notes, “to avoid prolonged gaps—especially with twice-daily medications.”

Dr. Johnson advises setting alarms to maintain your medication schedule, particularly during flights, when it's easy to lose track.

Be mindful of potential triggers

“Common triggers can be heightened while on vacation,” Dr. Johnson explains. Sleep deprivation, in particular, can be a significant seizure trigger for many individuals. “If there’s any way to ensure better sleep during your flight—such as traveling at a time that doesn't disrupt your rest—that would be beneficial,” she recommends.

Dr. Johnson also notes that alcohol can trigger seizures for some individuals, and this risk can increase during vacations when people often indulge more than usual.

Wear medical alert jewelry or carry relevant documentation

Traveling by air can complicate the experience for those with frequent seizures. Dr. Johnson advises consulting your physician about possible strategies, such as adjusting medication doses, obtaining extra benzodiazepines, or using a small dose of lorazepam or rescue medications. “The last thing you want is to have a seizure on a plane,” she warns.

It’s crucial to have a way to inform those around you about your condition in case of a seizure. “The worst scenario is when a solo traveler has a seizure, and the flight is grounded without anyone understanding what’s happening,” she warns. “Besides wearing a medical bracelet stating ‘seizure disorder,’ keep easily accessible documentation that says, ‘I have epilepsy, and here are the medications I take,’ along with an emergency contact number.” It's advisable to store this information in your wallet with your ID.

Don’t let a seizure spoil your journey

Seizures can differ greatly even for the same person, so there isn’t a strict protocol for how to react afterward. Dr. Johnson suggests keeping your neurologist in the loop and considering a hospital visit if you don’t return to normal quickly, experience multiple seizures without clear triggers, or encounter new neurological symptoms.

“I see it not just as travel itself, but also as the exciting yet potentially triggering experiences that can lead to seizures,” Dr. Johnson explains. “I encourage individuals with controlled seizures to travel as much as they can.”

Epilepsy can feel restrictive and overwhelming, but it’s essential to remember that it shouldn’t hinder your desire to explore the world. While there may be hurdles, being well-prepared and informed can make a significant difference.