Flying with dysautonomia

[Lynne]

I am wondering if there is any information or concern about flying with dysautonomia.  Please let me know.  My daughter is planning a trip so any advice is appreciated.  It is a 2-3 hour flight.  Do I need to worry?  Any tips?  Thanks.

[angelloz]

Hydration is important and helps me when I fly. Also, I think snacks.  It helps if it is not an early morning flight for me. It gives me a chance to hydrate and prepare my body. I think that length of a flight will be fine.

[Lynne]

Thanks very much.

 

[jojochristine]

I've wondered about flying as well. Because of dysautonomia, I have breathing and anxiety issues, and am having trouble thinking of flying at this point. Any tips?

[Roxy]

Some people have issues with the altitude changes, and getting/having symptoms be prepared just in case. 

[halffull]

I don't have many issues, but compression tights or socks help. Especially if the flight is over a couple of hours. 

I've heard that you shouldn't eat on planes (in general) because the pressure makes your stomach slow your digestion and that's often why people get jet lag. I don't know if that's true or not but I try not to eat on planes (just drink fluids). 

[Lily]

I have never had problems with the flights themselves, even 15 hours between Paris and San Francisco.  Waiting in line is usually more of an issue for me.  I make sure to wear compression hose, get extra water bottles, and bring salt.  And I am a rude girl who tries to put her feet on the backs of the armrests in front of me.

[jvherenow]

I have the same question. I haven't flown since being diagnosed. I have several flights coming up. I have a great deal of SOB, dizziness, and dysphonia when I flare up. I'm taking mestinon and am titrating up to 90 mg TID and that is helping.

I wish I could get Powerade Zero through security...

[Guest KiminOrlando]

8 minutes ago, jvherenow said:

I wish I could get Powerade Zero through security...

You can.... sometimes. I have. I told them it was medically necessary. They may open it and test a sample for explosives. I was in my wheelchair which probably gave me more credibility.  I had to explain that I couldn't just go buy 'something else'.  Depends on who you get. It has also been several years, so they may have tightened up security. 

I seriously doubt it would work on an international flight.

[Roxy]

I have my doctor write a note stating that food and drink I bring is medically necessary just like my medical equipment is. TSA now has a department that helps get you through security easier if you have medical issues/conditions.

[yogini]

You may want to search on the forum.  This topic has come up many times.  Most can safely fly and most who have posted this question have done fine on their trips.  The key is too be extra prepared - have everything you can need with you on the plane - medications, water, etc - and be well-rested.  Most do better than expected.  It isn't unusual to crash after a trip.  But it is usually worth it.

[jojochristine]

One of my main concerns is dealing with high anxiety, which I have because of dysautonomia. I'm already on an antidepressant to help keep me from panic attacks, but being in plane will only increase that anxiety.

[shan1212]

Flying is a struggle for me. It was after a flight to Europe that I first had a POTS attack. The next time I flew, it happened again (I would be fine in the air but crash with vomiting, dizziness, etc. a few hours after landing). Then I got pregnant with my second daughter and I'm sick with POTS all the time, so flying just makes it worse.

I've done some research on this. The air is thinner. It's the equivalent of being at 6000-8000 feet altitude. Also, the air is very dry, below 20% humidity. So if you are sensitive to these things, flying can exacerbate problems. And finally, if you have motion sickness, of course there's that too.

It took a few years, but now I have developed an actual phobia about flying. We had a trip across the country this summer for my mom's birthday cruise, and I was super nervous about it.  But I made it! 

I don't do early morning flights. Waking up earlier than usual throws me off.

I take as direct of a flight as possible. If I have to take two flights, then I want the layover to be in the right direction to shorten flying time.

I wear compression tights. This is tricky because I get super cold on airplanes, so if I am wearing only knee-high socks, my thighs will be cold. But full-on compression tights are uncomfortable when your stomach bloats from being in the air. I'm going to try thigh-high tights next time.

I bring tons of layers and blankets. Unless I am having a panic attack, I am usually freezing on airplanes. Also bring gloves and a hat. Wear layers so you can peel them off if you get warm.

I bring Normalyte packets and Nuun tablets. I have even travelled with salt and potassium in a baggie which I add to whatever drink I want. About every third time they will take it out and test it. I bring two empty water bottles and fill them up after we get through security. If the flight is longer than two hours I"ll probably buy another large bottle to bring on. On a recent flight people kept asking for water and the flight attendant never brought it. I filled up their cups from my extra bottle.

I get an aisle seat unless I am sitting next to a family member. I need to get up a lot. If I am feeling really dizzy, getting up and moving around helps. I go to the bathroom at least once an hour.

I'm fairly petite and flexible so I'm able to pretzel myself into a ball with my legs up and head sort of down, but it's not easy. Those airline seats are tiny.

I can't be hungry when I get on an airplane or else the lower blood sugar will set me off. I do my best to eat a good, easily digestible meal beforehand. I also bring snacks.

I dance around in my seat during take-off. If I am already feeling POTSie, it's like I can feel all the blood getting sucked down to my feet when we take off. So I try to keep my heart pumping better.

Normally I take 5 mg of Midodrine several times a day, but I take 10mg one hour before flying. That way I am at my best for take-off. I do often take phenergan, but since it's an antihistamine that can dry you out further, I try not to if I'm not feeling queasy. I have Ativan but I've never taken one for flying because I worry about it making my BP lower and my coldness worse, but I probably should have taken it recently when I had a panic attack before getting on the plane. 

I saw a local hypnotist about my phobia. She gave me two wonderful recordings of her leading me through relaxation. I imagine myself setting all my bodily functions -- HR, BP, etc. -- at the right setting. I imagine myself flying. I used this for preparation and also if I was panicking while flying. Fortunately the anxiety is usually anticipatory, and once I'm in the air I am less fearful. 

I also saw a regular therapist. Unfortunately, there's only so much exposure therapy you can do for flying. I took 8 flights this summer. I felt ill on nearly all of them, but only really ill on two. I had a panic attack and almost exited the plane while we were still at the gate once, but I pushed through. The worst thing to do with a phobia is to avoid, unfortunately. 

I have asked this question before, and most people with POTS said they were fine with flying. For me, it really triggers bad symptoms, and it's hard to make yourself do something knowing you won't feel well. But you know what? I did it anyway. I'm pretty proud of myself. The captain even gave me wings after the flight where I asked about deplaning! I cherish those.

The reality is that you might not feel well, but you aren't going to die. You will recover once you get back on the ground and do whatever you need to do to get out of a flare. I got to go to Alaska and my kids got to enjoy a Disney Cruise. Very special! I got fluids in the infirmary to help me on the cruise, too. And I always get IV fluids before I fly if I can.

[Guest ANCY]

I hope your flight goes well, I've not flown since diagnosis but I do love at an elevation of 8,500 ft. In terms of the altitude it's of utmost importance to stay as hydrated as possible. Could you maybe see if your dr thinks some IV fluids would be helpful prior to flight?

On a personal note, has anyone flown to a lower elevation and back again? 

[Lynne]

Wow!  I am going to read all of this again before we go.  I am nervous but will help my daughter get prepared.  Thank you all.

 

[Lemons2lemonade]

I fly often and it doesn't feel good. I always feel bad when the door closes and cabin pressure changes. But, to date no major issues besides discomfort. Also, I chug a water bottle before take off