Traveling with Dysautomia: 10 Tips and Tricks

With October being Dysautonomia awareness month, I (Maggie) wanted to share my story and some traveling tips and tricks with the hope that it helps you or someone you know. Traveling with Dysautonomia can be tricky, but it shouldn’t stop you from doing it. It’s just a matter of incorporating steps that will keep your symptoms at ease…

I’m a freelance travel writer and blogger, and I have Dysautonomia (POTS & NCS) and hypoglycemia –more about this below–. I know… I love my job! But it hasn’t always been easy, especially when solo traveling. I’ve fainted in the back of a van outside the airport, been really sick at an archaeological site, fainted in my hotel room countless times, had to sit with the mannequins in the front display of an H&M to let a tachycardia episode subside, and many more –now, funny– adventures. So, yes. I’d say over the past 10 years I’ve been perfecting the art of traveling with Dysautonomia/POTS, and hopefully now you can learn from my experience too.

For those of you who don’t know, Dysautonomia is defined as “an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System, which regulates heart rate, blood pressure, digestion, kidney function, temperature control and more.”* 

Two forms of dysautonomia are POTS (Postural Orthostatic Tachycardia Syndrome), “an orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing”*, and NCS (Neurocardiogenic Syncope), which basically means that not enough blood is sent to the brain upon standing ending up in a fainting episode.

Both POTS and NCS have a wide spectrum and the symptoms they cause can vary from one person to another, but these traveling tips may come in handy to most:

1. Know your limits. 
It can be frustrating, but there’s nothing wrong with having to slower the pace. Take note of the things that trigger your symptoms and plan around them. 

2. Don’t try to push through it. 
If symptoms appear, don’t ignore them or they will only get worse, and that could really ruin your day. It’s better to make peace with it, change your plans and take your time.

3. No strict itineraries. 
The worst you can do is plan every minute of every day, because things could not go accordingly. I always do a ‘best case scenario’ itinerary and then a list where I prioritize the things I’d like to do, just in case I need to change things up.

4. No plans after landing.
Lack of sleep, no proper meals and airplane dehydration is hard on anyone, but especially for those of us with Dysautonomia/POTS. Having no plans when landing will give you time to check-in, put your feet up, eat something and hydrate.

5. Prioritize meal time.
Know you can’t leave your meals ‘for later’, so make time in your itinerary. Plus, don’t forget to pack salty nuts or bars for your snacks and some Glucose tablets, just in case you need a rapid solution and something that will give you time to get to a restaurant and buy a proper meal.

6. Be careful with what you eat.
If, like Nils and I, you are a foodie, just keep in mind that large meals require the body to send more blood to the stomach for digestion, leaving you with low blood pressure symptoms. The perfect match is: small meals + low carb intake.

7. Stay hydrated.
Electrolyte tablets are your best friend. They are easy to carry, taste relatively good, and they can turn any water bottle into the perfect rehydration drink. If you don’t have them, just add a pinch of salt to any glass of water (the sodium will make you absorb it properly). Note: drinking alcohol will dehydrate you and worsen your symptoms, so take it easy. Especially when solo traveling.

8. Move while standing in line.
Standing for long periods of time can be tricky, but the key is to never be perfectly still. Crossing your legs while standing, changing positions or constantly bending your knees can help slower the fainting symptoms. Also, if you start to feel dizzy, do not care about what other people think and sit on the floor. Someone will follow you… guaranteed.

9. Have a good night sleep.
Lack of sleep equals dehydration, so going to bed really late can ruin your early morning plans. But… if you’re going partying, just make sure you drink loads of water before going to bed and keep a glass on the bedside table for when you wake up.

10. Write down instructions.
Fortunately, I’m one of the lucky ones who can tell when they’re about to faint, so I just slide down against a wall, put my feet up and explain what’s happening to whoever is next to me. Even so, you never know if that’ll always be the case, so writing down instructions (put my feet up, give me water with a pinch of salt, etc) may come in handy for those around you. It sounds geeky, but this way you don’t need to be worrying about people calling ambulances, because they don’t know what’s wrong with you.

Traveling with someone with Dysautonomia/POTS?

For those of you traveling with someone with Dysautonomia/POTS, Nils wanted to add a few tips for you:

1. If it’s your first time, don’t panic. It can be stressful for you, but they’re used to it. 
2. Pack salty snacks and water, just in case their stash runs out or you don’t have access to their backpack.
3. Be prepared. The symptoms present themselves very quickly, so it’s easier if you know what to do. Ask them in advance to write down their instructions (read above tip #10).
4. Be patient. Somedays they might need to take it slowly.
5. Keep an eye on them, but don’t over do it. They’ll tell you immediately if something is wrong, and with time you’ll notice the signs even before them.

Important note on Dysautonomia

Did you know that over 70 million people around the world have Dysautonomia*, yet many go years without a proper diagnosis? October is usually all about the pink campaigns supporting Breast Cancer awareness, but let’s not forget about the turquoise that represents Dysautonomia: the invisible illness which millions suffer, but few know about. 

Bringing awareness to this disease means that patients will no longer be ignored, be sent to a psychiatrist, or given the wrong treatment. I hope this was an exaggeration, but I, like many others, had to endure a misdiagnosis for 5 years. I remember crying when I was diagnosed with Dysautonomia. They were tears of relief for finally knowing that it wasn’t “all in my head” as some doctors had told me.

So, share this. Your simple ‘click’ could change someone else’s life.

*Information taken from Dysautonomia International, a non-profit organization dedicated to the awareness and education of Dysautonomia. You can read more about them and dysautonomia here: www.dysautonomiainternational.org.