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Astridmj

Flying with POTs and Orthostatic Hypotension and general other DYS issues

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Okay so I’ve read all the current info on flying in these forums so please bear that in mind. 

The only medication I’m prescribed is Oxazepam 30mg PRN or as needed determined by me.

So I have POTs, Orthostatic Hypotention, and general other dys symptoms. I don’t faint but I have come close when my blood pressure was super low. 

So I have a 9 hour flight there and back to Japan however it’s on a Dreamliner 😍 and I believe I have flown this route when I was first developing Dysautonomia so my issue I think is how to be better prepared and anxiety. On the flight back my heart rate the whole time was 130bpm and I also needed oxygen but again I wasn’t aware of dysautonomia or knew what anything was. Dreamliner has lower cabin pressure and better air so it should be much easier on the body. 

I have constant shortness of breath, but oxygen sat is generally 96-98 and I’ve been cleared for anything there and I’ve had cardiac clearance so no issues there either but I do get rapid pressure changes a lot just by moving around. I also have suspected Thoracic Outlet Syndrome and I can’t raise my arms for long without them being dead weights lol so I’m working on exercises to improve that, and I’m also getting acupuncture as recommended by my dys specialist. 

Things I’m worried about: If I get short of air and need oxygen how best to ask for it without sounding like there’s a medical emergency. Getting tachy on the flight and symptomatic and having anxiety because of that feeling like I’m about to die I’m sure we all know that ****** feeling. How I can really best prepare for a long haul there and back. I’m not terribly fit but I’m overweight but I’m trying to move more and get fitter before the flights which are in a few months, how to cope with the pressure changes in my chest and what to do if it feels like I’m about to die should that feeling happen and how best to avoid those feelings. 

Just pretty much from all angles how to cope and survive on a 9 hour flight. As much info as possible please!

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Where will you be starting from?  You're braver than I am.  I think I'd have to do a test run of a shorter flight before I decided to go over the ocean...... 

I don't know how to help you.  You seem way more prepared than I would be.  I just have decided to not fly.....  I'm not sure that I'll ever have to.  But my plan is to just avoid it.  Unless I get to the point that my symptoms have went into remission.  Which may not even be possible. 

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4 hours ago, AB+72 said:

Where will you be starting from?  You're braver than I am.  I think I'd have to do a test run of a shorter flight before I decided to go over the ocean...... 

I don't know how to help you.  You seem way more prepared than I would be.  I just have decided to not fly.....  I'm not sure that I'll ever have to.  But my plan is to just avoid it.  Unless I get to the point that my symptoms have went into remission.  Which may not even be possible. 

Haha very unhelpful but I’ve done it before I’m just trying to prepare myself more

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Could you get a letter from your doctor stating your condition and that you may require oxygen in flight. If you don't already have a finger sats probe maybe buying one to take on the flight would be helpful so you can demonstrate if your sats drop. Also all the usual like plenty of fluid, salt & compression wear.  You could get some electrolyte mix sachets to take through security and then mix into water bottles after that. Ask for bulkhead seats so you can put your legs up on your carry on bag if possible. Good luck with your journey. 

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I had my first flight since developing POTS, I flew to germany 2 years ago. By myself! And it went awesome! The thing that helped me was that I requested wheel chair assistance and they picked me up at check-in and took me all the way to the gate. On the return trip they picked me up at the door of the plane and took me through all the stops all the way to my family. That completely eliminated the stress ( If I would have had to walk I would have passed out in the first minutes and they would not have allowed me to enter the plane ). --- I agree with @bombsh3ll that a letter from your doc would be helpful. And if you have a sats probe would allow you to keep an eye on both your HR and O2 levels, if they are good you can rest easy, if the o2 is low you can ask for oxygen. Don't be alarmed if your HR goes up for that is a common reaction to flight anxiety even in "normal" people. -- Drink, salt-load, do chair exercises and get up to stretch and walk frequently ( 9 hours is a long time! ). And keep yourself occupied - I watched 3 movies and had a blast on my flight! The only thing I noticed was that my ankles were three times their normal size from sitting and pressure changes - but that went away after getting out of the plane. -- Last but not least: would Ativan help you for the unavoidable anxiety? My doc gave me some but I did not end up needing it. -- Good luck - it may well go better than expected!!!!

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It sounds like you have this well in hand. You are looking for all possible issues. I took half a dramimine pill to help with the dizzies that I figured would show. You could also ask your doc for a low dose Xanax. It would help the anxiety and tranq your body. Wouldn't help the shortness of breath (I know from experience) but it makes you not worry so much about it. 

I flew for the first time this past Christmas and the only issues I had was the noise. I have noise sensitivity. But it was a short trip on a cheap airline and my noise canceling headset did wonders. 

Good luck and enjoy your trip!

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Be careful with doctor's note. If the airline has it, they could decide not to allow you to fly especially over an ocean. They might decide you would be a medical risk requiring them to divert for a medical emergency costing them tons of money. You are not entitled to fly and they can refuse you service.

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While I don't typically fly (I'm bedridden anyway so can't do much) I have friends with POTS who swear compression garments are incredibly helpful when flying, as they prevent the blood pooling that happens, keeping your HR lower (and can help alleviate leg swelling in flight too).

My other question is, can your doctor give you a prescription for a beta blocker to be taken as needed? I can't use beta blockers regularly for various reasons, one being that if I'm at home and relaxed, my resting HR can be too low on its own. However, for awhile my doctor did give me a prescription for Metoprolol (which has one of the shorter half lives) to take just during certain situations, like MRIs, trips, etc. I was approved to take it if my HR hit 100 or higher, and if I was likely to be in a situation where it would stay like that for a little while.  I only needed half a pill (12.5mg) to be effective. I found at such low doses it didn't affect my BP.

In addition to immediate release Metoprolol, think Pindolol and Propranolol (short acting/immediate release) also have short half-lives and probably would be out of your system either by the time you finished your flight or shortly after. 

Also not sure if it's possible, but can you get IV fluids before the flight? I've heard that helps immensely. 

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I too have a form of POTS.  I have seen many doctors over the past 7 years but have seen little improvement.  I can not stand up and do anything useful because of low blood pressure (as low as 53/37) but reclined bp can go as high as 215/105.  Salt, fludrocortisone, northera and metoprolol, and exercise have been prescribed. Midodrine was tried but did not agree with me. What is working for any of you?  Is there anyone that has and is improving? I am tired of seeing doctors, (about 50) following there instructions and not getting better. Please respond if you have improved.  Thank you, Bill

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On 7/3/2018 at 5:11 PM, Bill Rossetti said:

I too have a form of POTS.  I have seen many doctors over the past 7 years but have seen little improvement.  I can not stand up and do anything useful because of low blood pressure (as low as 53/37) but reclined bp can go as high as 215/105.  Salt, fludrocortisone, northera and metoprolol, and exercise have been prescribed. Midodrine was tried but did not agree with me. What is working for any of you?  Is there anyone that has and is improving? I am tired of seeing doctors, (about 50) following there instructions and not getting better. Please respond if you have improved.  Thank you, Bill

Why no midodrine? I  know a lot of people complain of the tingling. But honestly you get used to it. Oh and my doc said, "good, that means it working!" Lol but seriously it has helped me tremendously. I take up to 5mg up to 3 times a day as needed plus metoperlol 25mg 2X a day. (At least I am supposed to. I usually only remember the 1 in the morning) I use a lot of salt on everything and drink lots of fluids. I think my POTS is generally mild compared to most. When it first hit it was bad but now it is just there. (Confirmed Nov. 2016, suspected start July 2015 if not earlier)

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