What preparations do you make when travelling with epilepsy?

Time zone travel…..how do you all manage medication times when flying across 6-8 time zones? Thanks.

@santosha excited to learn more about how you managed life on your trip! It’s courageous to set out in new ways after so many adjustments and changes.

I agree about epilepsy being often a hidden condition, then it can also become hyper-visible! I’m finding that people-myself included-have a lot to learn and unlearn about this condition.

Hearing about others’ perspectives and experiences in different places, ages, and circumstances is educational and usually encouraging.

I’m learning to appreciate what I have and can accept it more fully, knowing how others suffer in ways I do not. Realizing how people all over the world have epilepsy has enlightened me.

A very good morning to everyone!
Sharing a few more highlights from my trip to Uruguay last month — the happy surprises I had over there:
. Gluten-free options: Being gluten intolerant, I was genuinely impressed by the wide availability of gluten-free choices in restaurants, cafeterias and supermarkets — and even discovered some lovely keto shops. I later learned that Uruguay has legislation requiring restaurants and cafeterias to offer products for people with gluten restrictions, and has also taken steps to reduce taxes on those foods to make them more affordable.
. People's attitude: The warmth and care I encountered when I opened up about my epilepsy was remarkable — at the hotel, in restaurants, on tours, and especially at the airport. At Carrasco Airport in Montevideo, I received a badge given to travellers with invisible conditions, granting me priority at passport control and boarding. I have never experienced anything like this, either in Brazil or in Europe — no discrimination whatsoever, quite the opposite. I'm sharing a photo of myself with the badge! 😊 I am now working on my first aid card to place inside this badge and use here in São Paulo.
. Keto Treatment Center for Adults with Epilepsy: During this trip, I had the opportunity to visit the Keto Diet Center at the British Hospital in Montevideo, which focuses on treating refractory epilepsy in adults. The center is officially recognised by the International League Against Epilepsy (ILAE), placing it among a select group of formally accredited keto diet centers worldwide.
Uruguay is a genuinely welcoming country for people living with hidden disabilities such as epilepsy — and I will certainly be returning!
I would love to hear from our community: which countries have you found most welcoming during your travels?
Chris

@med951
I carry 1 mg. sublingual ativan which is used prn for seizure. If I’m afraid I’ll get off schedule with meds or lack of sleep, I go ahead and take half of one.
Meds in a weekly case-always.
Works for me!

A happy personal update: I have remained seizure-free since returning to São Paulo! The city's busy rhythm has certainly made itself felt again, but I'm increasingly convinced that my continued seizure freedom has more to do with the change of my CBD manufacturer than anything else.
Chris

@santosha
Hi Chris,

Happy for you! I wish I can say the same for me, being seizure free during and after my trip but unfortunately not. But nevertheless, it’s still a milestone and I’m quite sure it’s a milestone for you.

Time for your next milestone.

Cheers,
Louis

I just came back from a two-week trip to London and Paris, the first trip in many years, and the first international in quite some time. I was extremely nervous about the trip because my seizure threshold is manageable but still present. Typically, I'll have a seizure once every two weeks, sometimes even more frequently. I think my biggest fear, besides having a public seizure, was having a seizure in front of my extended family. The last seizure I had left some people yelling and freaking out despite notifying them of the proper response. People oftentimes don't appreciate the hidden baggage we carry from these less-than-ideal responses. So with that said, I had some fear.

The trip was fantastic, although I often went sleep-deprived, was dehydrated, and was off my normal schedule. Thankfully, I went seizure-free. With that said, I did have two seizure events. Both were due to being among very large crowds, loud noise, and heat. Fortunately, I noticed the progression and removed myself from the environmental triggers before things escalated into a much more noticeable event.

The coolest part of the trip was knowing that I could travel internationally, make new friends, confront seizure triggers, and minimize my seizure events by watching and responding closely when I felt an escalation of symptoms.

Lastly, I must acknowledge that this trip was possible at this unique stage of my journey. Even a year ago, a trip of this magnitude would have been unwise, and a year before that, a trip would have been impossible. I also made sure to provide special accommodations to reduce triggers. For example, I had special earplugs if I knew I would be in a loud environment. I also recognized my limitations and would take ownership of my health and knew when to decline certain activities like going into a place with a very high ceiling (a trigger). I also saw that if I had an event, I could survive as long as I heeded my body's warning signs (sweating, visual disturbances, losing balance). I now feel much more confident about tackling the next trip.

I just came back from a two-week trip to London and Paris, the first trip in many years, and the first international in quite some time. I was extremely nervous about the trip because my seizure threshold is manageable but still present. Typically, I'll have a seizure once every two weeks, sometimes even more frequently. I think my biggest fear, besides having a public seizure, was having a seizure in front of my extended family. The last seizure I had left some people yelling and freaking out despite notifying them of the proper response. People oftentimes don't appreciate the hidden baggage we carry from these less-than-ideal responses. So with that said, I had some fear.

The trip was fantastic, although I often went sleep-deprived, was dehydrated, and was off my normal schedule. Thankfully, I went seizure-free. With that said, I did have two seizure events. Both were due to being among very large crowds, loud noise, and heat. Fortunately, I noticed the progression and removed myself from the environmental triggers before things escalated into a much more noticeable event.

The coolest part of the trip was knowing that I could travel internationally, make new friends, confront seizure triggers, and minimize my seizure events by watching and responding closely when I felt an escalation of symptoms.

Lastly, I must acknowledge that this trip was possible at this unique stage of my journey. Even a year ago, a trip of this magnitude would have been unwise, and a year before that, a trip would have been impossible. I also made sure to provide special accommodations to reduce triggers. For example, I had special earplugs if I knew I would be in a loud environment. I also recognized my limitations and would take ownership of my health and knew when to decline certain activities like going into a place with a very high ceiling (a trigger). I also saw that if I had an event, I could survive as long as I heeded my body's warning signs (sweating, visual disturbances, losing balance). I now feel much more confident about tackling the next trip.