Flying Uk To Harvard- Can Folk With Pots Do Long Flights?

[persephone]

Hello all,

As you may know, I manage POTS quite well at the moment. I have trouble when the plane takes off and lands sometimes, but I am wondering if I could indeed fly long enough to get from the UK to Harvard for a conference this October.

also, any of you near Harvard- it would be great to meet up in the flesh, as I have been kicking about these boards on and off for 5 years and feel like I know some of you very well indeed!

P x

[futurehope]

I don't know the answer, but I'll be flying from the US (Philadelphia, PA) to Manchester UK this August and I'll find out!

I'm a bit apprehensive, but I'm determined to see my daughter who lives in Ripon, near Harrogate. So I'm definitely going.

[Katja]

I've flown between western/eastern Europe and the US multiple times, mostly with no problems (though the day I first got full-blown POTS symptoms was the day after I flew Boston-Stockholm). I seem to do fine as long as I drink lots of water/Gatorade/V8, and take in lots of salt before, during, and after the flight. I wear compression hose daily anyway, but I also keep my legs at least somewhat elevated throughout, usually just by planting them on my seat, next to me. My symptoms right now are under fairly good control with Florinef and Midodrine (plus salt, compression, and fluids), though.

[Guest tearose]

Let me know more! My son recently graduated Harvard and is living nearby still. I would be delighted to meet you!

What is the conference about? PM me!

As for the flight...lots of hydration, walk around when you can, use layers of compression and know that just shortly after take off and just before landing will be the hardest time with the changes in cabin pressure. I did well with a bit of caffeine to raise bp. Take a bit of extra salt to hold onto more fluids too, if you can manage more sodium.

tearose

[ramakentesh]

I hate to be the bringer of bad news but for some reason my WORST trigger for a relapse of POTS is a long distance jet flight. ive had three big trips overseas and three big POTS flare=ups.

[persephone]

THanks everyone for your feedback. Ramakentesh, I'm glad you told me- thanks for the heads up!

[mkoven]

I'd love to be able to fly transatlantic. I used to do it regularly before I got sick with no problems. But I'm afraid of feeling really bad and being "stuck" for the remainder of the flight. But I really don't know how I'd react. I did however research boats--they take a VERY long time, are pricey, and only leave/arrive from/in one or two ports.

[flop]

Hi Persephone,

I haven't flown at all since getting POTS but I did look into flying UK to Australia last year (in the end couldn't afford the trip but I'm saving up for another time).

I chatted with my doctors about it, one of the issues they raised was that the oxygen level in the cabin air is lower than ground level (this is partially due to technicalities of pressurizing the cabin, partially to do with cost and partially as people are more drowsy with lower oxygen so the passengers are more likely to sleep and cause less hassle!!). My GP recommended that I make arrangements with the airline so that I could be given supplemental oxygen if I needed it (I think you would need doctors letters).

Strongly agree with the extra hydration (cabin air is very dry so you get dehydrated more quickly than normal) plus it will make you need the bathroom so you will get a reminder to walk up and down regularly!!

Hope you enjoy the conference and trip.

Flop

[Csmith3]

Hi

I have been OK on long haul flights. I wouldn't say I feel at my best (due to mixture of POTS/dehydration, travel sickness and sinusitis), but I'm not too bad and soon recover. I'm back to normal the following day. For me the worst thing is sitting bolt upright for a long time (if only I could afford first class!) This means I cannot sleep, despite the usual red eye scheduling of flights back to the UK. So, extra leg room is good if you can book in advance. I am better if I can sit with my feet on the seat for a while - like a parrot, my mum would say.

I have been known to take pink Migraleve's before take off to calm my stomach and try to prevent a headache. If you have any similar remedies, you might want to consider taking them beforehand.

UK to Boston doesn't take that long and the flights are generally much smoother than those around Europe, so I expect you will be pleasantly surprised.

Have a good trip!

[persephone]

Just bumping this- does anyone fancy a meet in Harvard/Boston in October?

Persephone x x

[mkoven]

Hi Persephone,

Would love to, but am in Illinois--about a 2hour flight or 20 hour drive. If you decided to come to Chicago, we could drive up and meet you.

Are you presenting? What's your paper on?

[valliali]

I can't handle the take off and landing at all. I've had serious heart issues at these times. But otherwise, I actually felt great up in the air. The landings especially are so horrid I won't fly at all. Which is really sad because I used to travel a great deal. It sounds like most other people on here though don't have major issues. Good luck!

[ramakentesh]

For me its not so much the day of the flight - as the next day. the next day i always get dramatic symptoms and a POTS relapse that lasts for what ever length of time.

On the flight I might get a few palps and a little breathless but otherwise ok. But the next day my POTS flares bigtime.

ive had three major POTS crashes and each have been after a trip overseas - 9 months after HongKong, 5 months after Taiwan and 9 months and counting after the States. Trips were all worth it though, but its hard to get financial when your struggling to work for 9 months afterwards!

My doctor was iffy on the whole flights thing. Ive found studies that demonstrate that long haul flights deplete oxygen and endothelial nitric oxide. How these affect the POTS mechanisms is something Im interested in.

Since Ive got POTS ive had two operations, a few major infections, a death of a close family member and none of these caused a flare up of my symptoms - whereas flights always do. ive often wanted to pursue this myself because I feel that it might explain what is causing POTS at least in me...

[Elegiamore]

Here's what this website itself says about flying (look under "What to Avoid"):

"Travel by airplane is challenging for dysautonomics and may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some dysautonomia patients to hyperventilate. Hyperventilating makes a patient more likely to get symptoms of sympathetic activation (Robertson, 2002)."

Then it explains about oxygen and dry air.

My experience:

I flew from Atlanta to Hawaii by myself, which was a nine hour non-stop flight. When I landed I syncoped on the asphalt tarmat.

A police officer kicked me and "woke" me up. I tried to explain my problem and see if he could get me medical care, but he said that he was certain I had been drinking on the plane (right!) and that he was going to give me five minutes to get up or he would haul me off. I was able to literally crawl into the airport and a kind stranger helped me get water and called me a taxi. NEVER AGAIN.

Also, once I attempted to fly to my doctor appointments at the Cleveland Clinic, which was not a very long flight, from Atlanta to Cleveland. Unfortunately, it was the bumpiest flight I have ever been on and the flight crew REFUSED to allow any passengers to leave their seat (even to go to the bathroom)so I stand up even once to bend my legs so that I wouldn't pool. So of course, I syncoped in the chair and horrified the other passengers.

The pilot then tried to land at another airport, which would have just meant I had further to fly(!) and I barely got him to go ahead and land in Cleveland. I had to be hospitalized at the Cleveland Clinic when I arrived, which cost me a bundle.

I strongly advise everybody in this Forum to take the time to read the "What to Avoid" on this wonderful website. I was quite surprised that nobody else mentioned it.

If you have to fly, good luck and be sure to get your legs moving during the flight as well as the obvious hydration you need.

Best wishes,

Elegia

[valliali]

I feel like my response to flying/barometric pressure is also a HUGE clue as to what is going on with me, unfortunately, no body seems to take it seriously. I took really short flights, and each time, the landing especially KILLED me. Sent me into a horrid PSVT for at least an hour, with a hr in the 200s and the feeling that my heart was going to pound out of my chest. I was traveling with a doctor I worked with, who I had never met before and was trying to be all cool around, but ended up having to tell him that I thought I was dying. He was like, whoa, your heart is out of control and encouraged me to take even more beta blockers, though I had already taken like 200mg of toprol (my regular dose was 25).

Likewise, when I moved from CA to MD, I immediately and dramatically noticed how horribly I felt on the high humid/rainy days. Like I was dying. I went from being able to function in CA to bedbound on the east coast. My heart was constantly racing, couldn't breathe, and the head pressure, oh, the head pressure.

My doctors brush off any relationship to change in barometric pressure, but I'm sure that's the cause.

Does anyone else have this hypersensitivity?

It seems like most people find the actual flying to be pretty tolerable. Like Rama, I also paid for my flying afterwards, and I remember even going to the ER the day after (which I definitely don't do often). But I'm pretty sure I recovered fairly quickly. I think that, since I've posted about this before, most people find that compressions and fluid helps a great deal and makes flying pretty comfortable. I feel like my extreme reactions to pressure changes is a bit rare, and hopefully a clue to the puzzle, if only I could figure it out!!!

[Guest tearose]

How wonderful, yo were selected!!! Are you coming to give a presentation?

Yes, I will make the 3 hour trip up to visit you in Cambridge! After all those years of pushing and supporting you through school from across the ocean, this distance is simple...I will do my best to see you.

Are you managing your POTS well right now? The previous suggestions were good regarding flight planning. I suggest you ask your physician to write a note you will carry with you everywhere. Since you will need to move around the airplane cabin and need to carry water with you...

best regards Professor,

tearose

[potsgirl]

I haven't taken any country to country flights since I've been diagnosed, but I travel fairly well on 4-6 hour flights. I keep very hydrated, try to move around as much as possible, and rest up the day or two before. I'm very fatigued once I get to my destination, and usually go right to bed. The next day I feel better, but still very tired. My family is scattered around the country, and my mom can't travel, so I refuse to give up seeing my family...I just can't go very often and I usually travel with someone. Besides, the change of scenery does wonders for my emotional needs.

When are you presenting in October? I would love to come...

Cheers,

Jana

[Machair]

I have had severe symptoms after flying and am going long haul tomorrow.

This forum has helped me so much and I hope what I say helps too.

I suffer more the day after than on the flight, although I do get some palps at altitude. However the next day I usually have a full blown crash and try to keep hydrated and take as much electrolyte as I can. That said it can be a rough ride and it takes several days to even get stable. Big meals are a no no as my stomach rejects them and it bloats and causes problems. Hot sun is also a killer especially if humid. The palpitations are dreadful and sometimes I can't stop them for days.

I am hoping to get on top of this problem as I want to go to Tucson to visit my son next year which will be the longest I have flown long haul to date.

[Janey]

Hi! I flew from England to Barbados (8 hour flight) a few months ago. It worked for me because I was MEGA prepared before I went. I wore leg and abdomincal compression before and during the flight, took loads of hydrating salts all through the flight and for 5 hours after I got off the plane. I took compazine and I drank two litres of water while in the air (the bathroom breaks were a little annoying for some but it was worth it..) and I escaped with minimum POTS effects..

I have however had terrible POTS during short term flights where I have hyperventilated, but I think that was during a flare up, whereas maybe the Barbados flight was less of a flare up?

[futurehope]

I made it to the UK on an 8 hour overnight flight from Philadelphia, PA. It wasn't easy, I'll admit. I was sitting at the bulkhead (yeah), but at about 5 hours into the flight, I wanted to lay down so bad.... I actually put my feet straight up onto the bulkhead from my seat and slouched down into my seat as far as I could because I was feeling miserable, the no-oxygen in the brain headache.

But I'm here, with all my medications. Not for the faint-hearted but am glad I did it.

BTW, I may succomb and pay additional for the reclining first-class seats, because it was difficult being that miserable. OTOH, the return flight is during the day, not overnight, and, therefore, my be less stressful.

[cordellia]

bon voyage!

originally from cambridge, MA... now based in central europe... often fly to the east coast

from krakow ....

last month we routed krakow/munich/boston... the inbound flights were brilliant. no problems

other than the usual fatigue caused by long distance travel.

no issues with the crew... as i darted up/down and around--in an effort to keep my heart rate up and BP elevated...

had a letter from my doctor outlining my condition, the letter also clearly stated that

i am able to fly. water, water, water---salted snacks--moved about as much as i was able.

we fly business class (thank the aviation gods for points) so the ability to recline and position/reposition

my body made a world of difference. we also requested wheelchair service... i was reluctant

and embarrassed to utilize the chair... very glad that my husband prevailed...the walk between

gates would have taken at least 20 minutes...along with stairs, ramps etc... by using the wheelchair service,

i also avoided what was an interminable line at passport control in boston... standing on line is a real challenge

for me... i tried and failed on several occasions...

the outbound flights were problematic--a delay of eight hours-- this caused issues... we were in

transit for nearly 24 hours as a result of the delay.

note i have asked for and kindly been given upgrades on various carriers. there are some

fabulous (albeit harried) agents working the service desks that will extend this courtesy if they

are able.

when are you heading to cambridge? we are visiting, in september, as well.

best of luck with your presentation.

cordelia

[futurehope]

Cordelia,

What do you mean the agents gave you the upgrade if they were able? I had called for DAYS in advance of my trip, even twice the last day. I could only get an upgrade 24 hours prior to flight time, IF THEY HAD ONE. They had several a few days prior, and then nothing within the 24 hour period of flight departure, so I got nothing. But, if I had PAID for envoy class (business class, first class) from the beginning, I would have had them.

Are you on a frequent flyer program or something? Thanks in advance.

BTW, I may succumb and pay for envoy seating during the return flight. I do not want to feel that miserable if I can help it. I really cannot afford to buy those tickets outright, but I'll have to do something.

[yikespanic]

I was always afraid to fly with my POTS, but this past May I took my chances and my husband and I flew from Cleve Oh Airport USA to St. Thomas USVI. The trip there went fine, but the trip home was a little exahausting and my feet swelled and hurt for the week after coming home. We flew home on a Sunday and I went back to work Monday. I crashed and called in sick for three days to recoup. But I am glad we went, It was WONDERFUL to just get away from it all for two weeks and I did just fine at the beach every day and the heat was manageable. I hope you have a nice trip.

Hello all,

As you may know, I manage POTS quite well at the moment. I have trouble when the plane takes off and lands sometimes, but I am wondering if I could indeed fly long enough to get from the UK to Harvard for a conference this October.

also, any of you near Harvard- it would be great to meet up in the flesh, as I have been kicking about these boards on and off for 5 years and feel like I know some of you very well indeed!

P x

[yogini]

If I remember correctly, you are doing better POTS-wise? I didn't fly for the first year of POTS, but after that, have flown quite a bit...to see my family, for work and for fun. I've done non-stop flights to Europe, California and Hawaii -- which was 13 hrs. I haven't found the long flights to be any tougher than the short ones -- if anything easier b/c I can sleep. Flying is tiring, but manageable. I think as long as you are well-rested, hydrated and prepared everything will go smoothly. Enjoy!!!

[ramakentesh]

Hi! I flew from England to Barbados (8 hour flight) a few months ago. It worked for me because I was MEGA prepared before I went. I wore leg and abdomincal compression before and during the flight, took loads of hydrating salts all through the flight and for 5 hours after I got off the plane. I took compazine and I drank two litres of water while in the air (the bathroom breaks were a little annoying for some but it was worth it..) and I escaped with minimum POTS effects..

All the preparation in the world will not stop me experiencing a relapse post long haul flight. It is my WORST trigger - infact thus far its been my only relapse trigger. And this last relapse is just lifting now after 10 months...

Long haul flights deplete nitric oxide and oxygen in the blood severly.