← Return to What preparations do you make when travelling with epilepsy?

Discussion
Comment receiving replies
Profile picture for Dan Noyes @dannoyes

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.

Jump to this post


Replies to "I just came back from a two-week trip to London and Paris, the first trip in..."

@dannoyes - what terrific news!

@dannoyes
Hi Dan, Good Morning
What a milestone, and what a joy to read this!
You dealt with fear wisely, turning it into a compass rather than a barrier: catching your warning signs early, speaking up for yourself, and saying no when no was the right answer. That is self-knowledge put to its finest use.
One thing I'd love to hear more about: how did you handle your medication schedule across the different time zones?
Thank you for sharing this experience with us all. We have epilepsy — yes. But it does not define us, and it does not stop us. You just proved that beautifully.
Chris

@dannoyes Thanks for sharing your fears, fun, and how faithful attention to your circumstances opened opportunities for new experiences, Dan. Many helpful details in your comments.

Appropriate self-monitoring in crowds, family gatherings, and public spaces alike helps us stay regulated, for sure. I honor your frank discussion of the emotional side effects when others have to experience our seizures from their point of view. It’s hard on everyone.

Thanks for sharing photos:)! It’s exciting to learn from your journey, especially that when we give ourselves time to heal and permission to grow, change becomes an ally. Where to next?