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Traveling with Epilepsy: Takeoff!

LLWE_Takeoff!Meet Maureen Knorr, Living Well With Epilepsy’s newest writer. She’s traveling with epilepsy around the world – pills and all. I hope you enjoy her lighthearted approach to what can be some pretty complicated situations.

Traveling with Epilepsy

I love traveling, even though it comes with some serious baggage. Like waking up at 5 am for an 8 am flight, and then having to take my laptop out for security. I always “beep-beep-beep” the metal detector even though I have emptied my pockets. And somehow, I always manage to over or under pack – so I’m either washing my garments mid-trip or lugging around a big suitcase with clean clothes!

Counting the days

Traveling with epilepsy adds another level of complications. You’re not just counting out undies, you’re counting out meds. I take 9 pills a day (4 red and white ones, 2 big whites, 2 little whites, 1 mini-yellow, and sometimes a mini-white ) so for a weekend vacation I need to bring 18 pills (8 red and white ones, 4 big whites, 4 little whites, 2 mini-yellow, and mini-whites for just in case). For a week vacation I need 49 pills (you get the idea). It’s not rocket science but it is a pain in the butt – especially for the mathematically challenged. Plus, when you are packing something this important, something your life depends on, it’s hard not to double, triple, quadruple check your counting like a million times! And somehow still feel anxious it.

We vacation too

It’s not just the obsessive pill counting. There is also the challenge of getting your meds! I’ll explain. I’m allowed to fill 4 weeks of medication at once. If I have 1 week left of those 4, but am planning a two-week vacation I have to fight the pharmacist to refill my prescription before I leave! I mean, come-on!

Dear Pharmacists,
No one in the world is taking anti-epileptic drugs recreationally. They’re not fun pills.
Also, for future reference, people with epilepsy do go on vacation.

Twitchy People

LWWE_Takeoff!_02The Danger Zone

Pill counting and feisty pharmacists are just the beginning of travel stressors. Once you are on your vacation is when you truly enter the danger zone.

Before leaving the hotel for the day, have you ever asked yourself, “Do I bring my passport and cash with me or leave it here?” You weigh the risks of being pick-pocketed vs. the chance of a dodgy maid or thief. While having your passport stolen sucks, you can’t even compare it to losing your epilepsy medication.

For a two-week vacation I’ll have 100 pills with me. Do I carry those around and risk them being stolen, or leave them in my room and risk the maid calling the DEA on me!? I think it is a good rule of thumb is to treat medicine like it is cash. Bring enough with you for the next three days (just in case!) and then hide the rest in your suitcase and cross your fingers no one takes it.

Scary but not impossible

Traveling with epilepsy is scary but I know firsthand that it’s possible! I highly encourage you to challenge yourself and step out of that comfort zone. Let your fears go and take the risk!

How about you?

What is the biggest concern YOU have about traveling with epilepsy? Comment below.

Follow Maureen Knorr:
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!

7 Responses

  1. Leila Zorzie
    | Reply

    I love your note to pharmacists! I often make that comment, though it is usually directed towards insurance companies. My pharmacists are absolutely wonderful but their hands are often tied due to insurance restrictions. No one would take my pills for fun; they’re exhausting!
    I look forward to reading more of your adventures!

  2. Beth
    | Reply

    My daughter has epilepsy. She had surgery in February. She was diagnosed 7 years ago. She has had several 1 to 2 hour seizures that have left her in the ICU. Therefore, we never fly, and we always worry about where the nearest hospital is on the route to wherever we drive. Is the medication overheating? Did we bring enough? Etc. etc. At least we have a vacation.

  3. Maureen
    | Reply

    Thanks, Leila. I have to agree that insurance companies can be a big pain in the butt too! I feel like insurance companies think we’re trying to scam them out of money. But nope, we’re just trying to avoid the twitches!

    Beth, I’m very sorry to hear your daughter is struggling. I can’t even begin to imagine how scary those moments must be for the both of you. Have you seen improvement since the surgery?

  4. Jacqui
    | Reply

    I am 24 years old and a lot of my friends have set off on their OE’s post University or have trips planned for the next year or so. I keep putting my travel plans off as I worry about having a seizure in an unfamiliar and potentially dangerous country. Many of my friends say not to worry but its hard to get over the anxiety of it. Especially when I wouldn’t be able to do the drinking, partying they plan for and interrupted sleep patterns seems to trigger breakthrough seizures for me. I am hoping to travel to South East Asia once Ive been seizure free for at least a year!

  5. Livi
    | Reply

    I’m on state health care, so I can’t get more than a month at a time’s meds… except that I refill them at different weeks! Since I went on state health care I haven’t traveled for more than three days at a time. Partly because I’m not very well off (hence why I’m on public health care) and partly because the logistics of getting and keeping enough meds are harrowing.

  6. Maureen
    | Reply

    Hi Jacqui, Anxiety can be overwhelming for al travelers, and especially for those with medical conditions. Your friends may not understand that now, but as they learn more about epilepsy they will understand the challenges you face. I wish you the best of luck on a seizure-free year!

    Hi Livi, I agree that it’s very frustrating to always have meds and pharmacy visits on the mind. I hope with more and more brain research happening that we will have a cure one day!

  7. Lainie
    | Reply

    I bit the bullet and travelled OS a couple of years back basically just thinking “If I stay in my comfort zone forever that would be pretty boring” so I ventured out. I was on a very miniscule dose of meds but still dreaded the thought of having a seizure in public as I was still having one a month, maybe more if I drank a bit too much and didn’t have enough sleep. Anyway, I kept my wits about me, had a few seizures in a hostel room in Mexico somewhere over a period o a couple of weeks but they were worth it as the lead up to it was that I was out having fun and not living in fear. I had my doggy tag on and I let the girls know in my hostel room that something may happen. Thanks for sharing your story

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