Flying with POTS: How I Prepare and What I Bring

In the time that I’ve been diagnosed with POTS, I have been lucky enough to go on three vacations/trips that required flight to get there. All three were direct both ways, so that’s 6 flights. Six times going up into the atmosphere and coming back down that I knew my body wasn’t going to make it easy on me. And guess what? I’m about to do it again next month. How do I manage? It starts around a month or so beforehand.

If you’d like to learn more about POTS, click here!

Below you’ll find a timeline of how I prepare when flying to specifically accommodate my POTS and Dysautonomia.

1-2 Months Before the Flight:

If you get infusions in general, or for special events like flying, you’re going to want to get that infusion scheduled! If you have treatments you do that you can’t do while you’re away, be it at home or in a hospital, you’re going to want to make sure you’re still getting those in around your travel plans! Personally, the day or two before the flight I’ve found to be the most effective times for these appointments to take place. Of course, everyone is different, and your timing will vary based on your body and depending on your travel plans.

If you travel with medical equipment, call ahead and let the airline know if you’ll be needing assistance! I use my wheelchair in airports and like to call ahead to let them know. That way they’re expecting me for pre-board (all airlines I have flown pre-board wheelchair users), and I don’t have to worry about the hassle of showing up unexpected.

2 Weeks Before the Flight:

Assess your medical equipment and medication situation, and figure out what you need to have with you on the flight, and what you don’t. Anything that’s a necessity goes in a carry on, and anything that isn’t can be checked. Medical equipment doesn’t count as a carry on item when you fly Southwest Airlines, cool right? Check out your airline’s website to see what their policies are for medical equipment.

Check your medications and make sure you’re going to have enough to cover the entirety of your trip. If you’re going to need a refill midway through, call it in. If the pharmacy tells you that it’s too soon to refill the prescription, explain that you’re going on vacation and will need your refill before you return – this shouldn’t be an issue. When I went to Emerald Isle, I forgot one of the most important medications that I take multiple times a day. We were able to get the prescription sent to a pharmacy about 30 minutes from where we were staying, but we had to pay full price for it. Don’t make this mistake. Remember your meds!

Be Careful: You never know how long it will be until you can get your luggage! I recommend keeping all of your medications on your person, this way you’ll never miss a dose because you don’t have access to them. If you’re looking for ideas to help with medication management in general, you should check out this post.

1 Week Before the Flight:

I start hydrating like it’s going out of style. As potsies, I know we hydrate all the time anyway, but I turn it up a notch. Flights are dehydrating for everyone. If you have POTS, I shouldn’t have to tell you that something dehydrating for a normal person has the potential to be a million times worse for me and you. I also try to limit sugary drinks and go for the water or natural electrolyte supplements!

Same as hydration, I try to up my salt intake. POTS patients, in general, tend to have a lower blood volume than someone without POTS. Salt consumption helps with retaining those liquids you’re pouring into your body and filling you up! Which is probably the least scientific way I could’ve said that.

2 Days Before the Flight:

If you need a medical bag for medications, braces and splints, your pump and feeds, don’t be nervous! Just keep it separate from the rest of your stuff so that you can carry your medical bag on for free if your airline has this accommodation and you have too many bags.

If you aren’t fab at walking distances or standing around, you may want to use a wheelchair at the airport! Don’t be ashamed, because there’s nothing shameful about it. If using a wheelchair makes this whole experience easier for you, and helps manage your illnesses, go for it. Make sure you and your group or family are on the same page about whether or not you’ll be using a wheelchair, who will carry your bags, who will push you if you can’t self propel, etc. The less you have to worry about the better. I personally believe that airports put something in the water to make people frantic and stressed – yelling or arguing about wheelchairs is the last thing you want to be doing!

If you have anxiety or a fear of flying, check out this post by my friend Julia of Julia Does if you’re looking for ways to manage and cope for your flight.

Day of the Flight:

I make sure to take my medications and start hydrating early! On flight days I try to do everything in my power not to overextend myself or stress out. I also make sure I have my compression socks, I can’t fly without them! Double checking that I have enough of my medication to make it through not only my travel day, but also my vacation, always helps me feel safer about things. Making sure that I have my medical equipment and anything that could possibly be needed in case of emergency before I leave also helps put my mind at ease. Depending on my flight time, this may be something I do the night before. Whatever is easiest!

And that’s it!

This is how I prepare to have the best experience possible when flying with POTS and Dysautonomia. As I said before, everything is unique and everyone is different and what helps some patients won’t help all, but I often see questions about flying with POTS and Dysautonomia, so thought I would share my experiences and how I have found to be best to prepare!