Coming to in the lobby of a hip Shoreditch hotel with the metallic taste of blood in your mouth, surrounded by horrified-looking bystanders, isn’t the way you imagine starting a vacation. And opening your eyes in a Portuguese hospital and being told that, unbeknownst to you, you had spent hours walking hills to get there isn’t any better. But these can be the reality for travelers with epilepsy, and they’re experiences I’ve dealt with personally.
About 1 percent of the population lives with epilepsy, and as many with the neurological disorder know, there aren’t many answers. The first time I had a seizure, no one saw it, and I didn’t know it had happened. I simply woke up in Denmark in pain. By now, I’ve had seizures in at least six countries. I’m a travel writer, so what am I supposed to do—stop working?
The above might sound disheartening to some, but there are plenty of tips that can help make travel easier for epileptics. Be sure to consult with your doctor before a trip and before making any changes to your treatment.
Prepare to get extra medication
“When I talk to my patients who have epilepsy about an upcoming trip, having sufficient medication is a primary thing that we talk about,” explains neurologist Dr. Emily Johnson, adult epilepsy specialist at Johns Hopkins. For longer trips abroad, she suggests securing at least a 90-day supply. “They might have to ask their pharmacist for an early refill to get sufficient medication for traveling abroad.” Dealing with insurance companies, drug store chains, and busy or inattentive neurologists can cause delays, so give yourself plenty of time.
And ask your neurologist if you’re a candidate for fast-acting rescue medications. “If you feel a seizure coming on, or a seizure aura, there are now several different formulations of medications, including nasal sprays, that people can take to hopefully stop it in its tracks,” she says.
Pay attention to time-zone changes
Changing time zones can disrupt your medication schedule, so Dr. Johnson likes to consult with patients on a plan. She suggests pushing your medications “one way or another by about an hour per day” until you’re back in line with when you usually take your pills. “We have to keep in mind when they’ll take their medications as they travel and where they end up,” she says, “because we don’t want them to go—if they’re on a twice-a-day drug—too much longer than 12 hours without medication.”
Dr. Johnson suggests setting alarms to stay on schedule, especially on flights, when it’s particularly easy to forget.
Be aware of triggers
“Normal triggers are often amplified on vacations,” Dr. Johnson says. Sleep deprivation, she says, can be “a huge seizure trigger” for many. “If there’s any way you can get better sleep on the plane and fly at a time when you’re not missing a night or having it interrupted, that would be beneficial,” she suggests.
Dr. Johnson also says that alcohol can be a trigger for some, and it can creep up during vacation when “people have a tendency to have a few extra.”
Wear medic-alert jewelry or carry documentation
Flying can be a particularly complicated part of the travel experience. If you have frequent seizures, Dr. Johnson suggests consulting your doctor about options such as increasing medication, getting extra benzodiazepine, or adding a small dose of lorazepam or rescue medication, “because the last thing they want is a seizure on the plane.”
It’s also important to have a way to let those around you know about your condition in the case of a seizure. “The worst thing is when someone traveling alone has a seizure, the flight’s grounded, and no one knows what’s going on,” she advises. “In addition to having a medic bracelet that says ‘seizure disorder,’ have readily accessible documentation [that says], ‘I have epilepsy, and these are the medications that I take,’ and shares an emergency contact number.” Carrying that information in your wallet alongside your identification is a good idea.
Don’t let a seizure ruin your trip
Seizures vary even for one person, so there’s no hard-and-fast rule about how you should respond after having one. Dr. Johnson recommends you keep your neurologist informed and consider going to the hospital if you don’t get back to normal quickly, have multiple seizures with no clear triggers, or experience new or different neurological symptoms.
“I think of it as not so much travel itself, but some of the exciting and also triggering things that go with travel that are working for those seizures,” says Dr. Johnson. “I encourage people to travel if their seizures are controlled—to travel a lot.”
Epilepsy can feel limiting, debilitating, and crippling, but what’s important to know is that it shouldn’t stop you from seeing the world. While there may be challenges, preparation and knowledge can make all the difference.
