What preparations do you make when travelling with epilepsy?

As I prepare for a 3-week holiday in Uruguay, I want to start a discussion about travelling with epilepsy.

Travelling with epilepsy takes a little extra planning — but it shouldn't hold us back from exploring the world or simply getting from point A to point B with peace of mind.
For this trip, I'm making sure I have enough medication and that everything I take is accepted in Uruguay — especially my CBD oil. As always, I carry a letter from my doctor with details about my epilepsy and the medications I take. Since my seizures aren't fully controlled at the moment, I also researched the medical facilities at our destination, which brings me real peace of mind. And thankfully, Uruguay and Brazil share the same time zone, so no adjustments needed there!

I'd love to hear how you prepare for your holidays away from home. Please share your experiences — your insights could make a real difference for someone planning their first trip since their diagnosis, or who has been hesitant to travel at all.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Dan Noyes @dannoyes

What I didn't mention in my previous comment, @marianne72, traveling to France was far more difficult than traveling to London. I felt cognitively that my brain faced an added challenge in dealing with the language difference. Cognitively, I hadn't expected this challenge.

One small thing that helped me was I had a notebook where I reminded me things to observe. What were the most prominent colors I saw? What shades of those colors did I see? Were people smiling? Did they make eye contact? How could I engage with those around me (a simple nod was often enough)? Were there any unique plants, trees, or wildlife I saw? This helped me get past the hustle and bustle. I also went out of my way to engage with Uber drivers. Sometimes, even a grunt and raising of the hand in frustration at another driver was enough to help build a common bridge. Lastly, taking to engage with others helped me get out of my own head. One outcome was I made a friend from Uganda that I still chat with today.

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@dannoyes
Hi Dan!
I understand you completely. Interestingly, even though I speak French fluently and hold French citizenship, I can still get quite stressed in Paris. I think it's more about the city itself than any language barrier.
During my recent trip to Uruguay, I faced a language barrier of my own, but the people there were so warm and went out of their way to make themselves understood. Montevideo is also a wonderfully calm city.
What a great tip about taking little photos along the way to remember the small conquests. I love that idea!
And my suggestion for next time: try the French countryside. There's so much beauty to discover there, and the people tend to be far friendlier and more relaxed than in Paris.
Did I understand correctly that Gabe was with you on that English and French adventure?
Chris

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Profile picture for Dan Noyes @dannoyes

@santosha What I found incredibly difficult was coming back home. While I had a few impactful events on my trip, I had several significant ones during my first week back. It was interesting to see how my body took time to adjust. The trip reminded me that life doesn't have to pass me by and that I could intentionally spread my wings and fly (no pun intended).

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@dannoyes
You're not alone in this, Dan! Coming back home was harder than I'd imagined. Readjusting to São Paulo after three weeks in a city as calm and peaceful as Montevideo was quite demanding — and not just for me. My husband felt exactly the same way, and it's left us both reflecting on where we'd truly like to spend our lives in the future.
That said, my neuropsychologist wisely reminded me: there's a difference between spending holidays somewhere and actually living there. And my yoga teacher once put it beautifully — there are stressed people in peaceful cities, and calm people in busy ones.
Chris

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Good Morning to All of You!
I just came across an article that might be of interest to you.
How Do You Adjust Your Medication Time During a Time Change?
My Epilepsy Team
https://www.myepilepsyteam.com/resources/how-do-you-adjust-your-medication-time-during-a-time-change
This article could be a good starting point for a conversation with your doctor before your next trip to a different time zone.
Chris

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Good Morning 🌞
I just came across another article that might be helpful to many of you:

Epilepsy and Travel: 9 Tips for Safe Trips
My Epilepsy Team
https://www.myepilepsyteam.com/resources/epilepsy-and-travel-tips-for-safe-trips
Has anyone traveled recently? If so, it would be wonderful if you could share your experience here in this discussion.
Chris

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Good Morning 🌞
I just came across another article that might be helpful to many of you:

Epilepsy and Travel: 9 Tips for Safe Trips
My Epilepsy Team
https://www.myepilepsyteam.com/resources/epilepsy-and-travel-tips-for-safe-trips
Has anyone traveled recently? If so, it would be wonderful if you could share your experience here in this discussion.
Chris

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@santosha Thanks for posting this resource, Chris. It's a helpful checklist. I'll be traveling back to the US from Guatemala on Tuesday and am already preparing myself mentally, physically, and spiritually for the trip. I plan ahead for my meds (for several medical conditions), and have recently started taking an extra single dose of prednisone (the day before travel, day of, and day after) against the possibility of inflammation (for my Rheumatoid Arthritis). I have been traveling more frequently, thanks to feeling much more stable. I just passed the nine months seizure-free mark.

I appreciated some of the tips in the article b/c in late September I will be traveling alone to NY for a weekend conference and staying at a hotel--a very different and challenging trip than what I usually do, traveling back and forth between Iowa and Guatemala, which has become a familiar routine for the last dozen years with my husband.

For NY, I will look into what medical facilities are near the hotel and alert some of the conference staff, as the article suggested. Some of my triggers come from the constant visual overstimulation of being around many people, unfamiliar surroundings, and uncertainty in the travel day. I plan for time to rest and, if necessary, not participate in all the conference activities. I have a dear friend who lives in the city who I can rely on, too.

Thanks to the encouragement and stories of people in this group, I decided that this NY trip is a healthy goal for me, both a challenge and a reward to live a full life--with adequate precautions! Good thoughts and prayers appreciated!

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Profile picture for marianne72 @marianne72

@santosha Thanks for posting this resource, Chris. It's a helpful checklist. I'll be traveling back to the US from Guatemala on Tuesday and am already preparing myself mentally, physically, and spiritually for the trip. I plan ahead for my meds (for several medical conditions), and have recently started taking an extra single dose of prednisone (the day before travel, day of, and day after) against the possibility of inflammation (for my Rheumatoid Arthritis). I have been traveling more frequently, thanks to feeling much more stable. I just passed the nine months seizure-free mark.

I appreciated some of the tips in the article b/c in late September I will be traveling alone to NY for a weekend conference and staying at a hotel--a very different and challenging trip than what I usually do, traveling back and forth between Iowa and Guatemala, which has become a familiar routine for the last dozen years with my husband.

For NY, I will look into what medical facilities are near the hotel and alert some of the conference staff, as the article suggested. Some of my triggers come from the constant visual overstimulation of being around many people, unfamiliar surroundings, and uncertainty in the travel day. I plan for time to rest and, if necessary, not participate in all the conference activities. I have a dear friend who lives in the city who I can rely on, too.

Thanks to the encouragement and stories of people in this group, I decided that this NY trip is a healthy goal for me, both a challenge and a reward to live a full life--with adequate precautions! Good thoughts and prayers appreciated!

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Hi Marianne!
Nice to hear from you again, and wonderful to know you've been more stable and seizure-free for 9 months already! 👏 Also glad to hear the article I shared turned out to be a helpful checklist.
I still believe some of the seizures I've had during trips are related to my emotions, like stress, anxiety, and the fear of having a seizure far from home — all well-known seizure triggers. So preparing well for a trip in advance can give us some reassurance and help us manage those emotions better.
It's great that you're pushing yourself toward your next challenge with this solo trip to New York, and planning so far ahead for it. I'm also happy to know you have a dear friend there, which certainly gives you some comfort.
You already mentioned some of your triggers — the visual overstimulation, unfamiliar surroundings, uncertainty on travel days — and it sounds like you have solid plans in place for each of them, right? Is there anything else about the trip that still makes you feel unsure? And how did your trip back from Guatemala to the US go — did everything go smoothly? I hope so.
Chris

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Profile picture for marianne72 @marianne72

@santosha Thanks for posting this resource, Chris. It's a helpful checklist. I'll be traveling back to the US from Guatemala on Tuesday and am already preparing myself mentally, physically, and spiritually for the trip. I plan ahead for my meds (for several medical conditions), and have recently started taking an extra single dose of prednisone (the day before travel, day of, and day after) against the possibility of inflammation (for my Rheumatoid Arthritis). I have been traveling more frequently, thanks to feeling much more stable. I just passed the nine months seizure-free mark.

I appreciated some of the tips in the article b/c in late September I will be traveling alone to NY for a weekend conference and staying at a hotel--a very different and challenging trip than what I usually do, traveling back and forth between Iowa and Guatemala, which has become a familiar routine for the last dozen years with my husband.

For NY, I will look into what medical facilities are near the hotel and alert some of the conference staff, as the article suggested. Some of my triggers come from the constant visual overstimulation of being around many people, unfamiliar surroundings, and uncertainty in the travel day. I plan for time to rest and, if necessary, not participate in all the conference activities. I have a dear friend who lives in the city who I can rely on, too.

Thanks to the encouragement and stories of people in this group, I decided that this NY trip is a healthy goal for me, both a challenge and a reward to live a full life--with adequate precautions! Good thoughts and prayers appreciated!

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@marianne72

I am making Geneva my next target because a friend resides there. However, there’s no direct flight. Thus it’s either I do it via a transit in Middle East (of course a no no right now) or some busy big airports like London Heathrow or taking domestic flight after reaching Zurich. I’ll appreciate if someone can share what’s it like over at those airports now. It’s been a while since I traveled that far. Geneva is a challenge which I hope I’ll be able to do it one day after that 4hr flight to Taipei and spending those 4 days in Taiwan.

Doctor’s memo surely helps and me voluntarily asking if the officer wanted my bag checked did make things smoother. I got waved off.

Do share with me how the trip goes! I hadn’t been to the USA for more than a decade.

Cheers,
Louis

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