Tips for Travelling with POTS

Before developing POTS, I LOVED travelling. In fact, my family and I went somewhere every year growing up. I've been to Disneyland 12 times and I live in BC, Canada so that wasn't a short ride away. I almost got "wanderlust" tattooed on me when I was 18. My brother is currently in Peru with his girlfriend with no plans on coming back anytime soon and my mom was in Kenya for a month in August and has been to Vegas and Hawaii since then. I, on the other hand, became fearful of travelling with POTS and have been avoiding it at all costs.

On the one hand, I feel less of a need to travel because I no longer think of travelling as a way to fulfill my heart's desires. I think my generation often seeks adventure to fulfill a sense of purpose and identity. Don't get me wrong, travelling can fill our lives with great things, but I now realize that my purpose is greater than that.

I became comfortable with a life void of travelling. I didn't miss it, but it became an issue I had to face since I was surrounded by travel-enthusiasts. My family always wants to travel and I couldn't express my underlying fears, instead of immense gratitude, when they've wanted to take me somewhere over the past 4 years. Every time a trip was planned I would hope it would get cancelled. I wasn't looking forward to it whatsoever and all the "what ifs" came creeping into my mind. I don't have to deal with health insurance companies where I live so when I travel to the States I am terrified that I will literally make my family bankrupt over 1 hospital visit. I get travel insurance just in case but I have been informed that they will not cover pre-existing conditions.

When I first got sick with POTS I didn't even want to be 1 hour away from home. My dad owns a cottage an hour away by a lake and when I'd go there I was paralyzed with fear that something would go wrong, I wouldn't be close to the hospital, and I wouldn't be with my mom (who was my "safe person" when I was first sick). I hated going to appointments an hour away from me because it required extra planning and preparation which I met with extra worry and anxiety.

It didn't help that my family and I had a trip booked to Hawaii before I got sick that was going to take place 11 months after I first got sick. My family made it known that they would not be upset at me if I had to cancel and that we could always go another time, but I felt a lot of guilt with the idea. I was almost entirely bedridden but I went. It was great for my mental health and I'm so glad I went, but I was terrified the whole time. I was symptomatic the whole time and in the worst flare of my life.

I've traveled many times since then, mostly for medical treatments, but also to a family reunion (1 province and 1 short plane ride away), to visit my sick grandpa (a 2 hour plane ride away), and recently, to Mexico.

Last year my friends wanted to book a trip and I bailed. My health wasn't stable at the time but neither was my confidence in travelling. However, this past month, near the end of my trip to Mexico, I realized that I have finally overcome my fear of travelling. Don't get me wrong, I have to be incredibly mindful of my health and organize every aspect of a trip around it, but I want to travel again. I'm excited to travel again. This is a huge breakthrough for me.

Four years and twelve flights later, I have figured out how to travel in a way that accommodates my POTS and I wanted to share what I've learned with you.

These are some tips that have personally helped me:

  • Wear compression tights/socks on the plane

  • Wear comfy clothes on days you'll be travelling and dress in layers so you can take off some or put on more depending on the temperature of the plane.

  • A large scarf or cardigan can double as a blanket if you’d like to sleep on the plane

  • Take advantage of the airport's wheelchair service. They will wheel you to your gate and then into the plane and there will be a wheelchair ready for you as soon as you land. This is great if you aren't in a wheelchair full-time but don't want to waste all your spoons on travelling.

  • Bring your medications in your carry-on and have a printed report from your pharmacist proving that all the prescription medications are yours. I've never had a problem with packing medications but they recommend you do this just in case.

  • Pack a large empty water bottle and once you’re past security fill it up at a water fountain. Or buy a water bottle once you’re past but I like having a big one and not spending money on water. It often takes a while before the flight attendants will come around to bring you a tiny cup of water so you don't want to have to wait on them.

  • Print off your boarding pass at home before flying to avoid this line up.

  • While you're printing off your boarding pass, you'll have the option of choosing a seat. Choose a seat where you think you'll be most comfortable. At the front of each section there's often seats that have more leg room. Also keep in mind whether or not you want a window or an aisle seat. If you have to use the washroom a lot, the aisle seat is convenient, but if you'd like to sleep and don't want people waking you up to get by you all the time, the window seat might be more comfortable. I also experience less anxiety regarding turbulence when I'm near the window seat. Just some things to consider.

  • Pack gum to help with popping ears.

  • Pack electrolyte tablets or packages to add to your drinks.

  • Pack salty snacks for on the plane!!

  • A sleeping eye mask and ear plugs can help you sleep on the plane.

  • If possible, try to book your flight during a time that you’re typically less symptomatic. If you’re most symptomatic in the morning, try to book your flight for later on if possible.

  • The overstimulation involved in travelling is what really gets me. So I always make sure to pack my headphones so I can listen to music or watch movies if that’s a choice on the plane.

  • If you wear contacts, pack your glasses and a contact container on the plane so you can take them out to sleep.

  • Pack some Melatonin to beat the jet leg.

  • If possible, walk across the aisles to avoid excessive blood pooling during the flight.

  • Cooling wipes and portable fans might be your best friend during the flight if you have issues with heat intolerance

  • Pick a seat that would be most comfortable for you. Aisle seats are great if you will need to get up to go to the washroom or walk around the aisles quite a bit but a window seat might limit over stimulation from everything else going on during the flight.

  • If you get motion sickness you might want to pack Gravol.

  • I’ve packed glass bottles of liquid intjectable medications (and needles) in a lunch bag in my carry on with ice packs to keep them cool. I was worried about whether I was able to do this or not but it worked out well. I got to the hotel that had a mini fridge where I stored them after.

  • Don’t depend on the airline to provide you with foods that meet your dietary restrictions or to provide you with enough water. Even if they have both available, they won’t come around until after the first hour most likely and there’s a good chance you might want water before that.

  • Pack light but pack to be prepared. Whatever you pack you’ll have to be dragging it around the entire day. I always get sore after wearing my backpack all day but I want to pack a lot in my carry-on just in case my luggage is lost. I’ve never had an airline lose my luggage but I’ve had this happen to many people around me and I always worry that any essential medications or products to aid to my comfort and wellbeing are lost.

  • Weigh your suitcase before hand so you’re not stuck spending energy transferring stuff from one suitcase to another if it’s too overweight.

  • Pack your phone’s charger (and a portable charger if you have one) in your carry-on bag. Having my phone fully charged is a safety net for me: if something were to happen to my health, I can call 911 or a family member. If I am having a medical crisis while I travel alone and my phone is dead I’d fear stumbling across the airport surrounded by people who don’t know what’s going on and barely able to make it to someone who works at the airport. If I had my phone I could call my mom and she could talk me through it, calm me down, explain my illnesses to someone near me if necessary, or call the airline and tell them to come get me.

  • If a neck pillow will make you more comfortable on the flight, remember to pack it. My friend got a cheap $6 one from Target in the States that she let me borrow. There are also neck pillows you can inflate if you don’t want to carry another thing around the airport all day. However, blowing up balloons or things like this is not recommended for those with POTS as it can make us more symptomatic. But if you have someone who can blow it up for you, you can ask them if that's an option.

  • Don’t be afraid to call the airline ahead of time to ask questions and voice your concerns!

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