Is traveling with epilepsy possible? Can I do it? SHOULD I do it? This post will go over some of the main points to consider when planning a trip as a person with epilepsy.
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The following comes from my PERSONAL experiences, and is NOT medical advice!! I am simply sharing my story, and some of the advice I followed to make travel safer for myself as someone who had childhood epilepsy.
In this post, I’ll cover:
- My personal situation of traveling with epilepsy,
- Conversations with your doctor,
- Working with your triggers,
- Handling medication while traveling
- and other general safety tips!
Traveling With Epilepsy: My Story
I caught the travel bug at the ripe age of 13, and spent the next few summers doing exchange programs abroad.
And then, just after my 16th birthday, I woke up on the sofa to my mom telling me that I’d had a seizure while straightening my hair in the bathroom. Yikes.
If you’re reading this article, I’m guessing you (or someone you know) have epilepsy, so I don’t have to explain to you what happened next: lots of doctors, EEG’s, medication trials, and of course, more seizures.
To this day, we still don’t know what my triggers were, but our best guesses are sleep deprivation and the generally unhealthy lifestyle/diet I had in my teens.
I ended up on a medication that made me feel disgusting (they all did). But I was still adamant that I would get to travel again in the summer. Thankfully, I did! But it took a lot of extra preparation.
So what about your situation? This post is going to quickly cover the factors that I had to consider when traveling with epilepsy, so that you’ll have a starting point for your decision making.
1. What Does your Doctor Say?
Step one is to ALWAYS check with your doctor.
Not all cases of epilepsy are the same. My case was easily controlled with medication, and though I didn’t feel great while on medication, at least I was seizure free. So for me, traveling was considered okay!
Some people’s cases of epilepsy are quite severe, and their triggers may be especially easy to encounter while traveling. Your doctor will know best about whether you should travel, and how you can do so safely.
So start with a conversation with your doctor!
2. You Should Get Insurance for your Trip!
NO ONE puts an ER on their travel itinerary, but sometimes ending up in one is beyond our control. Especially with an epilepsy diagnosis, your risk of injury or chances of visiting a hospital are much higher.
Worst case scenarios with seizures may also involve you having to return home ahead of schedule. And emergency trips are often EXPENSIVE!!
Buying insurance is one of those things that feels SUPER complicated (I used to procrastinate a ton on it), but actually it’s really easy! I always use VisitorsCoverage to find a plan, and it never takes more than 5-10 minutes.
I wrote more about how I get insurance for my travels in this post!
3. Consider Your SPecific Case & Your Triggers
Seizures are SERIOUS, and can be EXTREMELY dangerous. So if your triggers are pretty much guaranteed to be encountered while traveling, I would ask yourself if it’s really worth the risk.
For myself, my case was controlled with medication. My seizures were serious, but I didn’t have them when I was getting proper rest. Plus, I never had them while medicated, so I felt safe to travel.
However, a girl I know who also had epilepsy would have episodes when being at a higher altitude. This could be triggered by visiting places of increased altitude, or sometimes even by flying, despite being on meds. Yikes!
In her case, she had a LOT more to consider when planning to travel. If flying is almost guaranteed to trigger a seizure, then that’s a pretty big red flag.
Consider your specific diagnosis and triggers. Consider the likelihood of having an episode while traveling. With your doctor’s help, you’ll be able to decide what’s best for your situation.
4. Don’t Go Solo when Traveling with Epilepsy!
One of the SMARTEST things you can do if you’re traveling with epilepsy is to GO WITH SOMEONE.
We all know that being alone if/when you have an episode can be deadly. Imagine how much more dangerous it is when you’re in a foreign country, perhaps with no one who speaks your language around you.
Honestly, I do NOT recommend solo travel for people with epilepsy. While I have traveled solo, I just want to point out again that while I was on medication, I remained seizure-free.
Plus, I ONLY traveled solo after I’d done a LOT of group travel, so I already knew that I was HIGHLY unlikely to have an episode triggered during travels as long as I avoided my triggers.
Make sure to tell whoever you’re traveling with about your condition, including triggers, seizure recognition and first aid, medications, and post-seizure care.
(Note: The Epilepsy Foundation has a bunch of resources on seizure recognition and support that may be helpful to share with friends at this page!)
5. Avoid Your Triggers or Factors that Cause Episodes
For me, since my suspected trigger was sleep deprivation, I made sure to get a LOT of rest while traveling: before the flight, on the flight, and after arriving.
If you are triggered by altitudes, as I mentioned earlier, choose travel destinations that have lower altitudes, such as beach towns!
And of course, we ALL know that strobe lights tend to be a HUGE no-go for people with epilepsy! Avoid clubs and concerts, or other venues where strobe lights may be present.
In short: consider you own factors, and how you may encounter them during your trip. And be sure to plan how you can avoid triggering an episode!
6. Plan Out Your Med Schedule In Advance!
Since everyone’s medication situation is different, I can’t advise you what to do here; I can only tell you that you should DEFINITELY think ahead on this one, and make sure to bring it up with your doctor!
Usually, people with epilepsy have to take seizure medications routinely. For myself, I took my meds once daily, around the same time every day, but not super precisely.
Meanwhile, some people have to take their medications at very PRECISE times, or else they’re at risk of a seizure.
In any case, make sure to look into the time difference at your destination, and plan accordingly.
For example, if you take your dosages at exactly 7am and 7pm every day, but your destination country is four hours ahead of your local time, that would mean taking your meds at 3am and 3pm every day in that country.
Will you wake up at 3am to take your pills? Are you able to gradually shift your medication schedule before you travel so that it will fit a new time zone?
These are all questions that ONLY your doctor can advise you on, so make sure to bring it up with them!
7. Make Sure To Pack Your Meds Safely!!
On the topic of medications, this tip is SO so important when traveling! Your seizures meds should ALWAYS stay with you, and NEVER be checked under the plane!
While I’ve been quite lucky with my baggage during my years of travel, sometimes baggage misses a transfer, or even gets lost entirely. If your seizure meds are in your checked luggage, that’s a HUGE problem.
Always, ALWAYS make sure to put your seizure medications in your carry-on baggage or purse when traveling.
On that note: make sure to bring MORE than enough meds, and consider splitting them up so one bottle is in your purse/backpack, and another is in your carry on.
What I did With My Medication While Traveling with Epilepsy
As a very paranoid person, I always think about the possibility of something getting lost or stolen. So here’s what I did with my medications while traveling:
- I brought at least DOUBLE the amount of medication I would need, in TWO separate pill bottles.
- I put one bottle of my medication in my backpack, and one bottle in my carry-on.
- If I only had my backpack with me for a trip, I’d put the other bottle in a friend’s backpack.
In this situation, I ALWAYS had the FULL amount of medication I needed for my trip on my person. And even if something happened to my backpack, I had another full supply in my carry-on or in my friend’s bag.
So I could lose a bag, and still have an ENTIRE trip’s worth of medication somewhere else!
In short: spread your meds out to lower your risk of losing all your meds at once in an emergency, and ALWAYS have extra on you!
8. Embrace How Traveling With Epilepsy Changes Plans
While traveling with epilepsy is possible, it may mean that your version of the trip looks different from other people’s versions.
You may not have super late nights, or maybe you need to spend your morning breakfasting and laying low, rather than hitting the streets early along with your friends.
You may need to focus less on seeing EVERY site, and focus more on a schedule that’s slower and calmer.
And honestly: you will have such BEAUTIFUL experiences taking things slower! I’ve found that sometimes, I experience a country more fully when I can talk with people, peruse streets, and go with the flow.
There are perks to having the ability to run around on minimal sleep and see EVERYTHING there is to see. But there are also MASSIVE perks in being more slow and mindful about your travels. Embrace it!
Summary
Is traveling with epilepsy a good idea? As we’ve learned: that answer depends WHOLLY upon your individual situation. Only you and your doctor can tell for sure!
But is it impossible to travel with such a diagnosis? Having visited six countries, and done over five years of living abroad, I’d say that I’m proof that it can work out!
With proper planning and attention to your situation, it may be possible to travel safely and smoothly, even with an epilepsy diagnosis.
I hope this post gave you some hope for your travels, as well as ideas of what to discuss with your doctor! Still have questions about traveling with epilepsy? I’d love to discuss them in the comments!
Sources in This Post:
“Seizure First Aid and Recognition.” Epilepsy Foundation, www.epilepsy.com/recognition.
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Interesting post))
Thanks, Jaredpem!!