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Flying with POTS

A Flight Worse Than the Vomit Comet

This was before my POTS diagnosis. I made some choices that are the exact OPPOSITE of what a POTSie should do, so my blood pressure dropped, creating one wicked flare.

I used to love flying, but that all changed waking up on a red-eye from San Diego to New York. It was one of the worst experiences of my life. I had decided to restrict my fluid intake to avoid the lavatories, and popped a melatonin shortly after take-off and slipped to sleep only to wake up shortly after, feeling that something was terrifyingly wrong. I felt nauseated and drenched with a sense of doom. What was going on!? I had no idea. I rushed to the lavatory hoping that relieving my bladder would help. No good. I started to feel incredibly faint, so I told the flight attendant. I was ghost white. After vomiting up the juice they tried giving me, the staff intercomm-ed asking if a doctor was on board. I felt like I must’ve travelled into someone else’s body- someone else’s life. The experience was surreal, and I never could’ve predicted it. I boarded the plane feeling fine, but woke up feeling indescribably trapped- both in my body, and in a mile-high metal fuselage roaring through the sky.

The doctor monitored me for the remainder of the flight making sure my heart rate didn’t escalate much past the 120 bpm as I just sat there hunched over and waiting for the next round of vomiting. I must’ve puked at least 5 times. The flight attendants were comforting, but I remained in a cloud of fear. I had no idea what was happening. Still no POTS diagnosis, so I had ignorantly believed I was a healthy person as long as I didn’t touch liquor. I felt like my body was spiraling around death, much like the way water swirls and drains out of a toilet bowl. The attendant made contact with the airline’s ground control medical team and offered to have an ambulance ready upon landing. I mentally inched along through time, minute by anguishing minute until we finally touched down.

I felt like my body was spiraling around death, much like the way water swirls and drains out of a toilet bowl.

In no exaggeration this experience gave me post traumatic stress, which a couple of effective EMDR (Eye Movement Desensitization and Reprocessing) sessions thankfully relieved. The trauma was primarily from not knowing that I would be ok. I had no diagnosis or clue. Now I know I would survive no problem despite feeling rock bottom awful. I spent a couple of days of my “vacation” at NYU’s ER, where I was told I had the stomach flu. I was skeptical, but hoped they were right. Of course, they were wrong.

A Much Better Flight

Somehow I was able to force my person back onto the return flight home. I weighed the option of returning home by rental car across the country, but I figured surviving a 5 hour trip was something I could- well- survive. By that time I had figured out that I felt marginally better drinking massive amounts of fluid, so I kept tilting back that gatorade and again I spent a lot of time going to the lavatory, but this time no vomiting! Since I wasn’t on any POTS or anxiety medication, my heart was thumping against the wall of my chest most of the way home, but that was the worst of it. I’m still not sure I will get on a plane again unless I truly have to. I’m certain the anxiety will be much worse than the POTS symptoms. I used to travel all the time for my job across the country, and was dedicating a big part of my annual budget to international travel. In my wildest dreams I’m healthy and back to flying to another exciting place without a true care in the world. Who knows? It could still happen.

So how are you supposed to fly with POTS?

Cabin pressure for virtually all flights is dropped to the equivalent elevation of 6,000-8,000 feet on land, with an average relative humidity less than 20%. This makes maintaining your blood pressure and hydration more difficult.

Have you doctor advise, but here are some essentials!

Get wheelchair assistance. Request wheelchair assistance when checking in at the airport or call ahead. Walking distances can be tough (or maybe impossible) on a good day, so lighten the burden and take advantage of this opportunity. They provide a wheelchair and an airport official to take you through security and staff will then help you onto the plane.

Stay hydrated. It’s common knowledge that air travel is dehydrating for even the healthiest people, so keep downing your electrolyte drinks. You’ll really want to be sure you’re hydrated before getting on the plane. Some even get IV fluids right before a flight. In hindsight, a HUGE mistake I made on my flight to NYC was limiting my fluids beforehand so I wouldn’t have to get up to use the bathroom. Don’t drink plain water, because that can dilute your electrolytes, making you feel worse and to some degree lower your blood volume (ie blood pressure).

Salty snacks. To keep your blood pressure up (by increasing blood volume), you’ll want to keep taking in plenty of salt. Something to be doing all the time, and especially in the days before a flight.

Get an aisle seat for easy access to the bathroom. For obvious reasons. You can also request an aisle seat prior to boarding, explaining that you have a condition that requires frequent need of the bathroom.

Wear compression stockings and/or sleeves. Though the cabin is pressurized, there is some pressure drop with the elevation, which can make you feel worse. Compression garments help maintain a better blood pressure and keep blood from pooling in your extremities. Hopefully meaning that your heart won’t have to work as hard. Great information about compression stockings at Dysautonomia International’s Blog: The Skinny on Compression Stockings

Keep your medications handy and premedicate as your doctor advises. For me, premedicating would be taking extra midodrine to force my blood vessels to constrict, and xanax or gabapentin. If I started to feel worse I would take chewable Benadryl (for my misbehaving mast cells), along with some Zofran for nausea.

Bring a mask if sensitive to smells. Since you’re clearly going to be stuck sharing air with a bunch of strangers who knows what scents you’ll be exposed to. A Vogmask is enough for many, while others need respirators for finer airborne allergens.

More reading for those with allergies…

In-Flight Allergic Emergencies, published in the World Allergy Organization Journal.

Financial Assistance

You might be able to get free flights to medical appointments.

One fellow patient used Mercy Medical Angels more than once for free flights to get to her appointments! Mercy Medical also has a Patient Travel Referral Program to match patients with other charitable transportation options.

Southwest Airlines has a commendable medical transportation grant program with a large list of non-profit hospitals and medical transportation organizations (including Mercy Medical Angels). The hospital or organization you need to go to might be listed, and reach them directly at their Social Work, Travel/Concierge Service, or Patient Assistance Department.

 

 

Published in Personal Stories Treatment & Help

2 Comments

  1. Noelle R B Noelle R B

    Have you flown since then? I had a bad flight about a year ago and am trying to convince myself I will do better now!

    • brandy brandy

      I actually haven’t, but I’m confident that if I could manage my anxiety I’d do fine. Did you have a diagnosis last time you flew? My experience was so brutal since it was such a surprise and out of left field… and had no meds to cope. Benadryl, midodrine and maybe a little zofran would have surely pulled me out of the worst of that. ALSO, I would do some more EMDR. I’d highly recommend giving that a shot if you haven’t already. Beyond looking backward at difficult experiences, it can also be used to visualize future circumstances to help prime you to feel safer in advance of triggering situations. Hope to hear how your flight goes!

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