What preparations do you make when travelling with epilepsy?

@hopeful33250
I’ve found I can usually purchase the medication I need in other countries (if I lose or use up what I brought) but the dosage is not always available. Hacking a big 400mg pill into fourths proved challenging in the beginning! Even things like Ibuprofen may not be available in the dosage you need. As with all aspects of travel, flexibility and a good attitude help 🙂

@marianne72 I really appreciate your practical suggestions for traveling with medications. You have developed a system that obviously works for you. I can imagine the difficulty in splitting a pill as you have done!

I agree with your comment: "As with all aspects of travel, flexibility and a good attitude help." This is so true about traveling as well as life in general.

Hello to all of you!
I'm back from my holidays and so happy to see that wonderful exchanges happened in our group while I was away. This is exactly what makes this community so special.
My husband and I had a great time in Uruguay: nice weather, excellent food, restful days, and — I'm still celebrating this — no seizures! I'm still asking myself why: was it the largely meat-based diet? The calm pace of Montevideo? The change of brand of my pure CBD oil? Perhaps all of the above. The busy rhythm of São Paulo in the coming weeks will certainly help me figure that out.
I share here some of my key learnings for safe travelling with epilepsy:
• Medications: I prepared a small travel pharmacy — not only my prescribed neurological medications, but also remedies for common issues like indigestion, headaches and colds. I also brought a letter from my doctor with details about my epilepsy and prescriptions, and verified that all my medications, including my CBD oil, were accepted in Uruguay. All this gave me real peace of mind. It also proved to be a smart move when my husband caught a cold in the last days of the trip, since medications in Uruguay are significantly more expensive than in Brazil.
• Medical facilities: Before travelling, I looked into neurology services in Montevideo. Knowing that good options were available — just in case — was truly reassuring.
• Accommodations: Good sleep is essential for us with epilepsy, so I chose our accommodations carefully. For the first week, we chose a hotel, and then moved to an Airbnb. Even so, I learned a new lesson: our Airbnb bedroom was right in front of an active construction site. Luckily, I had packed earplugs, which saved my yoga nidra sessions and afternoon naps. Next time, checking whether the bedroom faces the street will definitely be on my list.
• A smooth and flexible agenda: Unlike trips taken before, my husband and I had no fixed to-do list of places to visit. Each morning, we decided what to do based on how we both felt. After 10 seizure-free days, I felt confident enough to take two short day trips outside Montevideo.
Getting back home after three weeks away can itself be a stressor, so I've been making a conscious effort to ease back in gently:
• One bag at a time: instead of facing all the unpacking at once, my husband and I agreed to open one piece of luggage at a time.
• A light first week: I kept my first week back as free of commitments as possible.
• A priority list: before leaving, I prepared a short list of things to tackle on my return— it has been helping me feel in control without feeling overwhelmed.
Very nice to be back among you! I'd love to hear your thoughts and whether any of this rings true for you too.
Chris

@santosha had kindly invited me to share my travel experience here.

I just returned from a 4D3N trip to Taiwan (approx 4 hours plane ride away) 2 weeks ago with my mum and Filipino caregiver. Nothing dramatic happened, besides a brief 1 minute unconscious sudden seizure at a highway rest stop after a 2hr car ride. Security was using Google translate asking my caregiver if there's a need for an ambulance since I was on the ground. My caregiver could only say "He's ok ok" but then they took "Ok" as "Ok please call ambulance". Fortunately, my mum appeared at that moment after her bathroom break.

That's the reason I was reluctant to go for a trip although I love to travel. Flight attendants will have no issue with English. But I don't want them and surrounding passengers to panic if I have a seizure with me being unconscious. Despite any assurance from my travel companion, pilots opt for an emergency landing or a turn around which will then cause inconvenience for everyone.

1. Some may believe it is your doctor's opinion whether you can go for a trip, your confidence is also as important whether you can handle any trip. Be pragmatic. I know I seldom travel, so I don't choose NYC or London this time which is >10hrs plane ride away even though I can speak English and I will love to visit Times Square and there's a direct plane ride. I know my doctor will surely object for a good reason. Choose to take it easy the first time.

2. We had witnessed how serious travel delays can be. For international travels, if you are an American citizen, best to choose a country with a significant American embassy presence.

3. Opt for a full service carrier. And choose hotels near attractions you will more likely visit without you needing to spend a lot of time traveling. Me collapsing at the highway rest stop could be me not used to traveling that long a period. For those attractions you need to travel longer period to reach, just rest well the night before.

4. Don't plan too many things in 1 trip, especially in this current global climate and with epilepsy. I always tell myself I can one day go back again. Just chill and relax and take things easy. Thus, no need to pack too much medication and clothes.

5. I understand in America, people do travel in a different manner. We are used to taking short trips to Malaysia or Western Australia. Those are trips with multiple flights per day by many carriers. Thus if one is canceled for any reason, I can easily be arranged to be on the next flight a few hours later.

6. Memo from doctor meant for security/immigration is definitely important and best to be in the visiting country's home language.

That's all I can think of, when planning for trip and choosing destination. I am also glad to learn how many friends here plan for long trips.

Thanks for your detailed descriptions of managing travel. Very helpful and interesting! Glad you took a chance to get back on life’s journey! 💝

Recently I’ve had to travel through very large airports like O’Hare in Chicago, ones I usually avoid in our international travel. I sign up for a wheelchair to go from plane to connecting flight gate, which is—of course—usually at the opposite end of the airport, as much as 20-35 minutes away. I can manage the overstimulating environment much better from the chair, even though I could probably walk the distance. Risk and reward balance out here, especially when others are wary of my having another tonic/clonic seizure. I’m learning I don’t have to “prove it” to anyone that I am more physically capable than they think.

@marianne72

Hi!

Ah yes, I forgot to mention I hate mega airports with just 1 single mega terminal (like Doha). They can be good airports. But in the event my incoming flight is delayed and I have a connection with the connecting flight in the other end of the terminal, I have to run. And there's a chance my checked in bag may not make it.

I always prefer 1 mega airport with minor terminals with the same carrier occupying most of 1 similar terminal if I have an international connection. I won't need to walk too far clearing immigration for domestic connection and the train/bus taking me to the domestic terminal of same carrier can be easily reached. Or they may even be in the same terminal.

Cheers,
Louis

@marianne72

oh I did travel with a wheelchair once, with my caregiver being the one responsible with pushing me. Both us loved it. Not sure about the airports you normally trqnsport out of, I believe it's O'Hare?. For me it would be Changi in Singapore. At immigration, there's always a lane for passengers who require "special assistance" and the queue was normally very short. There I then remembered it was the same for the gates and those with wheelchairs would be called after those with frequent flier status for boarding. Wheelchair was checked in at the aircraft door. Before landing, a flight attendant came and asked if I would need any assistance upon disembarkation. Yup so we loved traveling with wheelchair 3 years ago but I chose to do things as "normal" as I could at Taipei last month.

Cheers,
Louis

@marianne72
@louissc
Thank you so much for sharing your travel experience in this discussion!
As @louissc wisely said, our confidence to handle a trip is as important as our doctor's opinion. Preparing my trip to Uruguay with care was very important to also give myself confidence — approximately 2.5 hours from São Paulo city, where I live.
On this trip, I also used the lane for passengers who require special assistance, and the queue was normally very short. Though I didn't look like someone with special assistance needs — epilepsy can many times be a hidden condition — I wasn't at all embarrassed to make use of it.
Curiosity @louissc: why did you have a 2hr car ride after landing? Is Taipei's airport that far from the city?
I'll update you very soon with more details on my first plane trip after some epilepsy complications I had in December 2024. One thing I can already share with you is that this trip gave me back my confidence for future travels. 😊
Chris

@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.

@santosha

Hi Chris,

The world still needs to be aware of the medical condition which is epilepsy. Over in this country, 150 are newly diagnosed every year and together with their family members, the numbers of affected citizens start to add up pretty fast given our population figure.

I took that 2.5hrs trip the day after I landed so I wasn’t too tired. It’s to visit an old business associate (now in his late 80s) and I should be the one making the trip rather than him. We met in another city. As for the distance between the airport and the city centre, its approx 1 hr journey during off peak traffic.

I just told myself during my trip that time is for me to chill and relax. I believe your trip will go well.

Cheers,
Louis