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Maisie87

Flying With Pots.. Yes Or No?

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Hi all, hope you are doing well!

~I have a trip planned to Europe (live in GA) which involves an 8 hour flight. Should I cancel the trip?~

I'm hoping you guys can share with me your flying experiences. I know air travel is rough for POTSies, but how rough?

I've had POTS since 2009, have flown on 2 and 3 hours flights a couple of times but nothing longer. My experience was unpleasant, but I bounced back a couple of hours after landing.

Thanks tons :)

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I don't think anyone is going to tell you to cancel a trip to Europe! I'm sure as bad as the flight may be, the experience will make up for it. I know a nurse who can't handle flights very well because the reduced oxygen can trigger anxiety. If you struggle with that, it might be something to prepare for.

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I felt really sick on the plane and in the airport, but a couple hours after I landed I was ok again (or at least as "ok" as I was before the plane ride lol). I hope you go and have fun! :)

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How about the jet lag? Is it longer/worse? What if a POTS patient does not have enough oxygen onboard? Is there oxygen equipment?

I'm planning a trip to Europe in 2014 and I'm trying to learn as much as possible.

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I have flown a few times since POTS entered my life (my husband and I are big on traveling). I find the things that help me are being really hydrated, salt loading, and compression socks. Even at that, I feel kind of a constant queasiness during the flight, which isn't very fun, but it's definitely tolerable. I just try to bring a really good book so I can keep my mind on that instead! lol I find that I'm usually tired afterwards, but the sick feeling goes away within a half hour of landing for me.

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By the way, I hope you have a fantastic time! Where are you going? I went to London, the Netherlands and Belgium about 3 years ago and had the best time! :)

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I have flown numerous times since my dx. and one unfortunately was the last visit to my mother to be with her in her last moments on earth. I had my security blanket with me (aka Big Handsome) and my wonderful children. I was at peace and had, under the circumstances a memorable time not only with my mother, but with my siblings and father as well.

My flights have never been abroad and never more than five hours in length. Even still, I've never had a problem. I usually double up on my anxiety meds and have a drink or two on the flight (always check with your dr. as some can't tolerate alcohol). I'm always fine. I've even gone on a (first) cruise with the hubby, had a few "bad" days but after getting my meds sorted, ended up having a wonderful, memorable time. We have an 11 day cruise scheduled for this fall and we can't wait. Yes, I freak out beforehand and right after arrival, but shortly I'm back to normal and everything is fine. Positive self talk...I will be ok, things will be great, I've waited for this and I WILL enjoy myself, and the like. Even though I have no desire to go to Europe, I do envy those that do. Have a wonderful time!!

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I fly a lot, most of the trips are overseas( more than 7 hrs long)..sometimes one after the other with a 3-4 hr stop. I have realised that if I'm well hydrated which means a LOT of water, I do pretty well and don't feel as jet-legged/fatigued later on too. I do have a drink or two so that I can sleep on most of the flight but anymore and I feel awful.

I take an empty bottle of water with me to the plane and ask the flight attendant to fill it up with water. They usually willing do it but the last time I flew, the attendant was so mean..he made a face, so I said that I have a medical condition where I need to drink water all the time.... He made a bigger face, so I said that I have Dysautonomia/POTS...to which he sarcastically told another attendant that he had never heard of a medical condition that required you to drink more water..Sigh!

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I've flown 4 times since I've had POTS, although it was all before I was diagnosed. Once was a 24 hour trip from Australia, with the longest leg 15 hours and I was pretty bad at the time (I got POTS after getting sick there and had to get home). I actually felt better on the flight than I had in weeks! Probably because I obsessively drink water on long haul flights. Try to get an aisle seat so you can drink a lot without worrying about bothering people to use the restroom and you can try to stretch your legs and get your blood flowing if you need to.

I think the worst part was the jet lag, it took me wayyy longer to recover than usual. I think our bodies just aren't as resilient as most. So I would be aware of that as you plan your first few days!

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Yes! Go! Europe? Are you kidding?

Here are things I do when I have to fly:

- make sure to get a bulkhead seat where so I can move around, stand up and prop legs up

- get 2 ltrs of saline IV within 12 hrs of flight

- take full dose of Xanax

- alert head stewardess of condition when boarding plane. (be careful not to alarm but to educate saying I have a non-life threatening fainting condition that likely won't be a problem but want to make them aware before take off in case I faint.)

- if possible get a wheelchair through security and boarding both before and after flight - so I don't have to stand in lines

- set alarm clock for every hour in flight and get up and walk the aisles

- plan at least one full day of rest in hotel after I arrive before any activities

- Identify hospital near where I am staying and arrange IV services in advance so I don't have to go through ER

I fly to Idaho from Florida, not overseas- but a really long journey nonetheless. This plan has worked well for me. You know yourself best and I'd just say do whTever you can to plan in advance for a successful flight.

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I fly with compression stockings. I bring a big empty water bottle (to get through security) and EFS powder, and then I fill it in the water fountain and also buy some water in the airport to refill mid-flight. I also bring Nuun tablets with me. I sit in the aisle so I can get up a lot (and go to the bathroom because of all the water + EFS I'm drinking). I layer heavily because I get very very cold when flying.

This won't really apply flying to Europe, probably, because you usually return midday, but I've found that it's the kiss of death for me to fly somewhere, spend a few days, and then catch a 6 a.m. flight home. I absolutely cannot wake up early after a taxing trip, so I book my return flight for midday or later. I learned this after two 6 a.m. return flights when I nearly didn't make it on or off the plane.

One thing to think about is that when you fly from the US to Europe on the red eye, you normally arrive at 9 a.m. or so, and that's too early to check into your hotel. If you're not feeling well after the flight, you might want somewhere to rest, so it might not hurt to contact the hotel and even be willing to pay for an extra day so you can get in the room right away when you arrive.

I haven't flown to Europe since my diagnosis (though looking back on our 2010 trip to Paris, I had a POTS episode the afternoon that we arrived), but when I do, I may get IV fluids before I go just to give myself an edge.

ETA: HAVE FUN!

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Thanks to all of you.. I really appreciate it. Several of you have suggested getting IV fluids before the flight. Is this easy to do? Do I need a prescription or referral ?

THANKS!

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Yes. Discuss w your primary care doc and explain it is helpful for fluid loading before a long flight. Most hospitals have an IV therapy unit that if planned in advance will be able to give fluids. Some have made arrangements w home health or other labs. May require some investigating but well worth it to find a way to get fluids easily in future if needed.

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I flew to Hong Kong a few months ago - a 16 hr flight. I did all of the same things Kellysavedbygrace mentioned and found that I did just fine. As soon as you can - call your airline's disability help desk. Their website will have a 1-800 number. I flew United and happened to get a woman who was a paramedic when I called their disability desk. I didn't bother getting into dysautonomia or POTS as no one will know what that is anyway. I explained that I have Orthostatic Intolerance and needed to be able to elevate my legs. She totally understood. I didn't need a dr note. She arranged wheelchairs for me on both ends of both flights so I didn't have to stand thru security or boarding. That was a major lifesaver!! You dont want to be worn out before you even board! She also bumped me (& my family traveling with me) to bulkhead. When I boarded I let the flt attendant near me know I had to elevate my legs for a medical condition. On both flights they were amazing!! One attendant even yelled at a woman trying to step over my legs!! Lol. But in bulkhead, you can prop your feet up on your carry on as well as up on the wall. And your usually near the bathroom since you'll be drinking so much & probably have to pee a lot ;)

I did get IV saline before the flight. I figured it couldn't hurt. My PCP arranged it with my local hospital.

Finally - leave more recovery time on arrival than you think you'll need. In addition to being realistic, this also will help manage your expectations. It took me 3 days to adjust once in Hong Kong - but that was a 12 hr time difference so hopefully you can bounce back in a day or so.

Have a blast!!! Even though unfortunately PoTS follows us wherever we go - you'll feel a huge sense of accomplishment for going and seeing the world in spite of it :)

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I find that an abdominal binder helps me when traveling too. For some reason, it keeps me from having to pee so much and I retain my water better. I get a neoprene one from Ross in the exercise section, and put it on after security. I also carry my camelback bottle empty through security and fill it up when I get through. Then you also have a big container for the attendants to keep full for you. I put it on a clip and clip it to my bag.

I fly a good bit and find that I'm really tired the next day. If you are going West - for some reason I don't get as much jet lag. But, going East is worse for me.

I also take an anxiety med before boarding and because of having EDS and needing to support my arms, neck etc. I carry a fleece blanket and a neck pillow. You can tuck them around you to make yourself comfy. If I need more support, I'll ask for blankets. They provide those usually on international trips. I also have my Motion Mate easy to get too - in case my nausea hits.

Have fun. You can do it despite POTS. :)

Issie

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I also flew internationally with POTS - a 12 hour flight. I was nervous, so I packed a benzo just in case. I was fine, but very tired afterwards. Slept really well the whole time I was away.

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Have flown all over the world in the last five years, (to China in biz class) but a trip to Hawaii from the east coast (although in first class) made me fell as though I'd arrived in the back of a pick up truck, and took days to recover from. Why is first class upright, when biz class is lying flat? From the same coast and for the same cost? It pays to investigate the legs of the trip. Flying back from Hawaii to the east coast with different stops in Biz class was a breeze. Laying flat on Delta. In simple terms, first class is awful, and Biz class is wonderful. To Hawaii, Europe, or China.

Biz class is the way to go, and it's not a problem as you can lie almost flat or recently, completely flat. To Europe though from the east coast is not nearly as difficult. East coast to Europe is not a huge problem, but at this point I would only fly biz class, so that when I arrived I was coherent and functional.

Bon voyage.

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A dr once suggested upping a dose of florinef before a flight over the concern that volume depletion might be a problem. Id suggest moving around as much as possible to avoid overdoing the pooling et.c

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I actually don't mind it. I don't know what happens with my body but I also fall asleep (like dead asleep). It's kind of weird. I get the same kind of drugged sleep feeling when I'm having a really bad episode, but it's definitely not a normal sleep is my point. I don't mind it too much though because I always wake back up and after a day of resting I'm usually good to know. It doesn't usually trigger anything else. (I definitely need that day of resting afterwards though.) Added bonus, I've never had to sit through a whole flight! :-) They always seem to be over in like half an hour no matter how far I'm flying. (I've found that I don't do well on layovers unless I'm with someone though, because I'll fall asleep and miss my next plane. (Last time I flew I just sat at the gate and told the flight attendant in charge of boarding though and she woke me up.)

Hope this helps!

Enjoy your trip!

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