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On the Road with Epilepsy: Tips for Travel

"If you’re traveling with epilepsy, you should be aware of what your seizure triggers are, you have to communicate with the people around you, and avoiding stress is critical."

As a retired IT senior level manager, Epilepsy Advocate Alan was accustomed to spending lots of time on the road and in the air. Travel is never easy, but traveling with epilepsy presents a unique set of challenges. Here’s how Alan handled those challenges.

"If you’re traveling with epilepsy, you should be aware of what your seizure triggers are, you have to communicate with the people around you, and avoiding stress is critical."

Of course, if you’re traveling for work, it’s not always possible to avoid stress. I kept a spreadsheet for years tracking all my seizures and all the variables like my fatigue and my stress level to help figure out my median stress level and my seizure triggers. Over time, I determined when I was most vulnerable. Once I figured that out, I could try to avoid my triggers. I’m glad I did, because it made a difference in how I did my job and managed my stress and my job was very stressful.


At one point, I was flying back and forth from North Carolina to my client’s home office in Maryland about every other week. I always stayed in the same hotel while in Maryland, so I’d gotten to know the staff and manager well. During one of these trips, I was in the middle of a big, stressful project, and I had a lot on my mind. I went down to the lobby early one morning for breakfast and placed my order, then put my head in my hands and started thinking about all the things I had to do that day. Before I knew it, I had dozed off. Now, whenever I have a lot on my mind and I’m stressed, I almost always have a seizure when I take a short nap. Sure enough, when I came to, I was on a gurney, about to be shoved into an ambulance. Oh Lord, I realized, I must have had a bad one. I noticed they didn’t have me tied down though, so while the two medics were discussing what to do, I jumped down. Their eyes got big as saucers, and they tried to get me to go with them to the ER.


Instead, I asked for the hotel manager to come out; I explained the situation to everyone and offered to take care of whatever damage was done in the dining room. When the ambulance left, I sat down with the hotel manager and talked to her a little more about my epilepsy. I explained what it was, what my seizures looked like, and how to respond. I also drew up a personal contract where I absolved the hotel of any responsibility if I hurt myself during a seizure. She didn’t want to sign it, but I insisted. After that, she and the staff felt more comfortable with my epilepsy. Knowing these travels would last over a year, I should have told her when I first started staying there, instead of waiting until I had a bad seizure in her dining room. But live and learn.


Another time, I was flying cross-country to San Diego to meet with a software vendor. I was working on my presentation on the plane, and it was another one of those stressful days. Once I felt good about my presentation, I decided to take a short nap. Now remember, for me: nap + stress = seizure. When I came to, I was in a wheelchair in the airport. Once again, I wasn’t restrained, so I jumped up and said “I’m good to go.” This time, I had a colleague sitting about 10 rows behind me. He knew my situation, and when he saw me being put in the wheelchair, he knew what had happened. He grabbed my bags and waited for me outside, and off we went.


This is a great example of the difference communication makes. Wherever I worked, I sat down with my boss and my team and explained the situation not to panic them, but just so they’d know what was happening and to help me make sure I didn’t fall or hurt myself. This helped ensure everyone I worked with knew what was happening and wasn’t scared if I had a seizure. And it never embarrassed or scared me when I had a seizure while traveling; I was probably more embarrassed for people who saw me and didn’t understand.


Now that I’m retired, I don’t travel like I used to, but I keep these lessons in mind when I share my story. And now that I’ve been seizure-free for four and a half years, I’m getting to take many trips I always wanted to take before I leave this earth: feeling what it’s like to live like “normal people”! For that, I’m grateful, and I’m enjoying every minute of it.


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EpilepsyAdvocate is a community of people living with epilepsy, their family members, and their caregivers.