Long Haul Flight.... Any Advice?

[Rachel Cox]

Hello! We are very bravely, making a family trip to the States in December, which will necessarily include a very long flight (12 hours).

I recently took a short flight locally and the effects were terrible. My tear duct stopped working on one side and streamed on the other, my abdomen distention was extreme (without food), my feet and hands became painful and swollen and I felt dizzy and spacey... not to mention desperate to lie down. I am thinking there must be some good advice out there in the forum that will help me to make this approaching flight more tolerable. We can't afford to get two 'sky lounges' which are three seats opened out together to make a bed, so we have opted for one, for the kids. If I take it then two of us will be seatless. There is no stopover between here and LA.

...nervous...

Any advice?

[Rachel Cox]

also... does anyone know why flying would exacerbate my dysautonomia? I don't understand how that works...?

[Dizzysillyak]

Hi rachel,

The symptoms you listed as reactions to air travel all sound like allergic reactions to me. Are you on the

mast cell protocal ? You may be reacting to the chemicals used in planes. Benadryl may be necessary

if other h1s don't stop this.

I have to eat super healthy meals frequently when flying too. I need the nutrients for the additional stress. I bring salads with dressing and a meat and they've never stopped me.

On the seating, can you take the bed and let one of your kids sit and sleep ? Maybe let them alternate.

I always fly with wheelchair assistance and request an empty seat next to me if possible. Sometimes I get it but not always. Putting my feet up on the chair next to me helps. You can request this at check- in too.

Tc .. D

[E Soskis]

Flying changes pressures within your body - even when the cabin is pressurized, it is different than being on the ground. I was not allowed to fly for several years - until my cardiologist inserted a pacemaker - once I got the pacer, I can fly again. I used to want to be a flight nurse but, I got sicker than most of the patients so, that didn't work out.

[Rachel Cox]

Oh thank you! Lots of good ideas here.

[EllenD]

I have a lot of trouble flying. For me it's at least partly dehydration- airplanes have very dry air. I fly with wheelchair assistance, it's really necessary on the arrival side! Also my doc gave me a note to carry pedialyte onto the plane and this helps as long as you start drinking it before the symptoms get bad- doesn't taste great but it's got more salt than Gatorade and they now sell it as a powder that you can add to water so you can carry it on the plane without a prescription. Besides that just get ur feet up- even if it's just putting a bag under your feet any bit helps.

You can also try 'seabands' if turbulence makes you motion sick. They are wrist bands that are supposed to press on an acupuncture point. I tried them for driving long distance and at least they didn't make anything worse. I have friends that swear by them though, so I think you just have to try and see how they work for you. Good luck!

[Rachel Cox]

Thanks Ellen, I am seeing my doctor today so I will ask him for a letter re.pedialyte... that is a great idea. My husband is relunctant to ask for wheelchair assistance but I agree that it is going to be necessary at the other end. I felt so horrendous after just three hours last time. It was terrible.

[Dizzysillyak]

Wheelchair assistance is great. You get to rest and someone takes you, your bags and your family where you need to go. They know where all the elevators, trains, terminals, etc. are so there's no searching. I usually ask for OJ and they even know where to find that too.

I usually tell my assistant right away that I can't comprehend what all I need to do so I'll need their guidance all the way. That way I'm not ready to cry from the stress. And they're not angry with me for not knowing what to do.

The airports have special lines at security for wheelchair people so you get through easier. At security, they tell me exactly what to do as far as shoes, computers, food, etc. And they talk to the security people for me if I there are any questions. I just walk throught the scanner on my own and sit back in my wheelchair. I tip well ($5 - $10 depending on time and effort involved) because I really couldn't imagine flying without this kind of assistance.

I've only had one or two assistants that I wasn't happy with but they still got me where I needed to go. I had one who insisted on stopping and talking to everyone he knew along the way.

You'll need to remind the airline people everytime you need a wheelchair tho. And don't hesitate to remind them twice if it hasn't shown up. Esp if you're travelling during the holidays.

Hope you have a great trip. It's nice to get away ... tc ... d

[issie]

I wear an abdominal binder and that helps with the fluid build up in the abdomen. I will also wear my compression socks. I take a back pillow and a pillow to go around my neck. I carry on an empty Camelback bottle and when I step on the plane and the stewardess greets me --I had her my bottle and ask her to fill it with water. I'm usually nervous - initially with flying and having water in hand immediately - helps to calm me. I know I won't be having to wait for hours to get something to drink. If you can get some ginger chews that's great if you get a little motion sick and it helps with ear popping. I agree with the wheelchair idea----I don't always use it ---but, it has worked out well when I have. If I'm having a really Potsie day ---I go up to the security people and tell them I can't stand long because of a medical condition and they send me straight through security and I don't have to wait in line. You can also tell them at entrance of the plane the same thing and that you need more time and get in as one of the first ones. That way, you don't have to stand so long and really get sick before you even get off the ground. Hope all goes well and you not only enjoy the trip and it won't be as bad as you anticipate ---but, you also enjoy the trip once you get where you're going.

Issie

[arizona girl]

I understand the hesitation to use the wheel chair, especially since most of us can still walk. Never thought I would use one, and then I had an episode on my flight back from seeing Dr. Grubb. I had no choice I couldn't stand and almost lost my cookies. The wheel chair assistance was unbelievable and so helpful.

As I can't stand in lines either, whether I use a wheel chair or not I always go through handicap security line. They can't question you in the usa as to why, against the law. You just say you need assistance and they let you through. Didn't think my husband would go for this, but now he loves the benefits of getting through the security mazes so quickly and the convenice of my handicap tag for parking. With kids also traveling with you, he will love it even more, and just needs to get over feeling embarassed that assistance is needed. You need to save your energy to get through the flight.

Make sure your ticket says your flying handicap assisted, this can be added after the fact. It cuts down on the dog and pony show at the ticket counter. At the ticket counter ask how full the plane is. If it is not full and since you already have your seats, let the flight attend know that you periodically need to elevate your legs and ask if you should need to do that can you use an empty set of seats to do that. Tell her you may not need it, but would love her help if you do. On one flight the pilot made sure I had all three seats to myself and I was able to lay down. If the plane is full though you will have less options. They do though usually have seats left open for assistance at check in.

Let us know how it goes and what worked when you get back.

[Dizzysillyak]

I forgot to mention too that when I first get to the airport, if there's no one outside who can help me get a wheelchair, the airlines have instructed me to go up to any of their empty counters, first class or whatever and ask them for a wheelchair. They said I don't need to ever stand in a line. While I'm standing there, they do whatever I need done and call for a wheelchair. : )

I can walk short distances fine but the longer I walk and esp if I've got luggage, I'll get potsy and have a petite mal and sob. I used to try dealing with this on my own at the airport but decided it

wasn't worth it. The stress of not getting where I need to be is too much for me. I feel so much better avoiding this. Now if I could only get this kind of service at whole foods. ; )

Tc .. D

[Rachel Cox]

Thank you so much everyone! My lovely doctor has written me a letter of explanation should I need it for the flight crew. We will book for wheelchair assist (big discussion with hubby and he agrees). I have a kit planned with all my bits and pieces to get through the flight and I am feeling much more positive. I have also just started Mestinon (60mg 3xday) and I am feeling so much better! early days so I am cautious but very very hopeful. Today I managed to bake! (doing some internal happy dancing here!)

I really appreciate all your advice and reflections. Looking forward to getting away to the cold!

R

[ramakentesh]

yes - saline beforehand.