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The Realities of Flying with Epilepsy


Some pre-planning may make flying less stressful

A post on the Epilepsy Foundation’s community forum caught our attention: “Has anyone had troubles when flying?” The writer wanted to know if anyone has had problems because of the altitude or an oxygen change in the cabin. The person also worried about falling asleep on the plane and having a seizure.

The post drew several replies. One person wrote that weather and short flights “make me feel rough.” A travel agent posted, “I’m not sure I can ever fly seizure free again!” The travel agent wrote of having seizures on three flights and wondered if it wasn’t because of the motion, the altitude, or ”the smell of turkey jerky” that was sold on the flights.

This blog started out to be about general tips for traveling with a seizure disorder. (We’ve still included some below!) But we’re changing course slightly. We at Seizure Clusters Connect™ thought it would be helpful to focus on the challenges of air travel. Let’s face it, flying can cause jet lag and jagged nerves for anybody. There’s air turbulence, flight delays, luggage hassles, tight seats, and of course, getting through security.

Since September 11, 2001, air travel has become even more difficult for people with a seizure disorder. Heightened security brings increased scrutiny of medications carried on flights. It may also mean closer questioning of vagus nerve stimulators (VNS) and magnets, and a closer watch for behavior that’s out of the ordinary.

Airline personnel are trained in how to handle emergencies, such as a seizure. But what if they don’t recognize that you are having a seizure? What if they think that you might hurt someone? Will they try to restrain you? Should you tell them in advance you have a seizure disorder? If you do, can they ask you to get off the plane?

Things to know before you go

To set the record straight, there is no medical evidence that air travel increases the risk of seizures. Generally, a person with epilepsy doesn’t pose any greater risk on a plane than someone without epilepsy. However, on occasion, airline personnel may try to prevent someone with epilepsy from flying. Federal laws prohibit this from happening unless the pilot feels there’s a real safety risk.

You don’t have to present a medical certificate from a doctor saying it’s safe to travel. In fact, you don’t have to share anything about your condition with airline personnel unless you think it might help prevent any misunderstanding.

The travel agent who posted on the Epilepsy Foundation community forum suggested telling a flight attendant you may have a seizure if you have an aura. “Believe me, I know you don’t want to bring attention to yourself but reality is reality,” the writer replied to the poster nervous about flying. “We have to live our lives and must do what we can for our own safety.”

If there is any question about whether you should fly, talk to your healthcare team. Your doctor may advise traveling with a companion and having a seizure action plan. If so, the companion should know how to recognize a seizure and administer first aid if needed. They should also be able to explain the situation to the flight crew, which could keep the pilot from landing the plane—common procedure in medical emergencies if there is no medical doctor on board.

Before you go, also check with your doctor for any dosing schedule adjustments and to make sure your medications are all up-to-date. And pack two sets of medications—one in your checked bags and the other on the plane with you. This way, if one set is lost, you or the person in your care won’t be left without any medication.

Another word of advice for flying: Bring your own snack.

Have a safe flight!

A travel checklist

Here are 5 practical travel tips, whether you’re going by plane, train, or boat!

1) Wear a medical ID bracelet or necklace indicating you have a seizure disorder.

2) Always carry your medical identification information in your purse or wallet, along with the names of all your medications/doses, and the phone number of your doctor. Be sure that you give this information to your traveling companion(s) before you depart. If you have a VNS device, carry the registration card and manual. Review operations with your traveling companions.

3) Ask your doctor whether traveling across time zones will affect your medication schedule.

4) Carry all medications in properly labeled bottles, in case security personnel check them. You may also want to ask your pharmacist how to handle your medications when transporting them.

5) Get a good night’s sleep before travel. Lack of sleep can be a trigger for seizures. So it’s important to build rest time into your plans to minimize your risk for having seizures.

July 1, 2015 | Categories: General

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