Any Advice On Air Travel?

[Angelika_23]

Hello,

I am travelling to Wisconsin to see Dr. Heffez for a consultation. Does anyone have any advice on air travel? What does it do to us physically? What can I do to make it easier?

Thanks,

Angela

[Maggy]

Hi

Flying will obviously affect us all in different ways,but my experience on a recent two hour trip was quite a struggle. I found take off and landing caused problems of extremely fast heart rate ( may have to do with anxiety?), blood pressure dropped very low 60/40, this caused me to pass out on the way up and nearly pass out on the way down, i think the difference was that i loaded with high amounts of fluid on the journey back.

Once in the air when my body had regulated, it took about twenty minutes to do so, i found that pressure was building in my torso and my abdomen swelled like a packet of crisps would have done, the pain was unbearable.

The advice would be to drink lots and lots of fluid, wear support flight socks to try and stop blood pooling and keep legs moving at all times.

This was just my experience of flying and again i must stress we all react different, i have read previous posts where people have flown and had no problems at all.

Safe flying and i hope all goes well

Maggy

[Sophia3]

I don't fly but the secret is to work on hydrating for a couple days before flying.

Make sure to take all your meds in appropriate bottles. Ask around for maximum water bottle you can take on plane ONCE YOU GET THROUGH SECURITY of course.

take salty snacks in your purse (peanut butter and crackers/pretzels)

Hydrate with Gatorade all day before (I get the powdered Orange flavor at Marsh, kroger only carries Lemon Lime in powder..but be careful BOTH FLAVORS are in Orange canisters)

They need stirring so the powder does not settle in glass..but you can make it weaker if you need to and tastes BETTER than junk premade in bottle. More economical. Also you can put some in ziplock back and put in purse (Hopefully, ask around about this with other flyers)

Talk to your phone buddies about this. They should have helpful hints for you, too.

When is your appt with Heffez?

P.S. take some chewing gum for your ears!! some fresh easy to chew stuff. I mean chewing helps the ears.

Do not put gum IN your ears, lol.

[Mrs. Burschman]

P.S. take some chewing gum for your ears!! some fresh easy to chew stuff. I mean chewing helps the ears.

Do not put gum IN your ears, lol.

Although that might also be useful if you are seated next to a squalling baby or talkative adult!

Amy

[Sushi]

For flying I also take powdered electrolytes in sealed packets so they don't look suspicious. You can get packets of Emer'gen-C with or without sugar in health food stores--full of electrolytes, or, from the same company, just the electrolytes without the C--called electro mix. Then take a large empty water bottle with you through security and fill up at the 1st drinking fountain and add the electrolytes--and keep glugging. Also the compression hose and a tight girdle helps. I asked the airline to give me wheelchair service last time, and it made things ever so much easier.

Happy flying. With all that, I had no trouble.

[pat57]

If you intend to advise the flight attendants of possible problems, they will want a clearance to fly from your Dr.

wear the stockings, drink the water- as mentioned, take a cane seat, could be long lines traveling now!!

good luck

[Angelika_23]

Hello, thanks for all the advice.

My husband made the arrangements, and told them I needed a wheelchair. I'm not sure how that works, so if anyone knows, please tell me. They are supposedly going to meet me at the ticketing counter??? I hope they realize he meant all flights, both coming and going.

Ha ha Sophia - I won't put gum in my ears. My appointment with Dr. Heffez is on Tuesday morning. I have to do some testing on Monday morning at the hospital.

Angela

[dawn]

I am unable to tolerate flying.

I take Amtrak and really enjoy it.

Dawn

[Sophia3]

Angelika

Good luck with your appt.

DO consider some foam earplugs for the plane in case you sit near the back or noisy people...tuning out noise can help calm the ANS whether POTS or chiari related. If you know anybody with noise canceling head phones, I would strongly suggest borrowing those...can help cut down on flying fatigue. :-)

[juliegee]

Hi Angela,

My husband works for the airlines. You should have an attendant wheel you (push your wheel chair) or drive you (via electric golfcart) through security and directly to your gate. Upon landing, another attendant will be there to wheel/drive you to baggage claim (if that's necessary) or directly to car rental/shuttle buses.

Be sure to let personnel know what you need. There are folks assigned to just take care of you. if your hubby's accompanying you, you'll be in extra good hands as he will also be able to let personnel know what you need.

I flew recently and am always amazed at how difficult they make it for us. Some of the security concerns may be a bit more relaxed for you as you are in a wheel chair. In case they're not, be sure to have your ID and boarding pass ready for the TSA as you get in the security line AND after you pass through the metal detector. (Don't put it away after the first show.) us non-wheelchair folk have to remove shoes, and coats/cardigans and put them through the screening device. Besure to only have 3 oz or less toiletries in a quart sized bag. One quart sized bag per passenger. My son has meds that require refrigeration and I pack a small amount in a quart sized bag with frozen blue ice and have never had a problem- thought I'd mention that in case you have a similiar situation.

Best of luck. Be sure and let us know how your appt. goes.

Julie

[Angelika_23]

Thanks Julie,

My husband is not accompanying me. He is very upset that he cannot go, but this trip came about a little too quickly for him to arrange time off from work. So I am on my own.

Your post made me feel better about what to expect at the airport.

Will I be able to have my "person" stop at a place in the airport so I can buy food and/or a drink? Just wondering.

Angela

[jhjd]

Last time I flew, I had my doctor write a "To whom it may concern" letter talking about my condition and how I needed fluids, etc. I didn't end up needing it as I had a nice flight attendant who took care of me, but it was a comfort- this may be particularly true for you, since you're going to be flying in a busy season, and may be subject to delays. (Being stuck on a tarmac could really be bad for us).

Good luck!

[Sushi]

Angela,

Just to throw in another 2 cents, you can make all the right arrangements for wheelchairs, (and they should try to seat you in certain seats that are more accessible), but I find that it is necessary to keep checking--before I board one flight I ask that they make sure there is a wheelchair at the other end. And sometimes they put my handluggage in the overhead without being asked, usually I had to ask. Same with getting your luggage at the end, you may need to ask your wheelchair person to stay with you and drag the luggage off. But it is SO much easier than flying without a wheelchair.

Oh, and if you can get one of those transparent wallet things that hang around your neck with your boarding pass and ID, that helps a lot.

Good flying!

[Eli6596]

Hi,

I have flown several times with POTS. I have learned a lot of tricks.

Wheelchair advice:

1)When you check in at the ticket counter, make sure that they have in the computer that you need a wheelchair WITH ASSISTANCE for ALL of your flights. ONe time, I was given a wheelchair with no-one to push me!!

2)Be sure to bring extra cash to TIP the person who pushes your wheelchair

3)If you have a connecting flight, make sure to check the gate at a monitor as soon as you get off the airplane. THe gate assignments can change. One time I almost missed my flight because I was wheeled to the wrong gate. Show the person the gate number in writing since many of them do not speak good ENglish.

4)As soon as you board the plane, tell the flight attendant that you will need a wheelchair with assistance when you arrive at the gate. Do NOT leave the plane until the wheelchair is there for you. Sit in the "comfort" of the airplane until the chair is there. Otherwise, you may wait for several minutes in the cold outside while they forget about you. (That one has happened to me too)

5)Yes, the wheelchair helper will stop and let you buy lunch, but they seem to expect more of a tip. ONe person was blatantly rude to me, telling me that I did not tip her enough! However, others are so nice that they thank me warmly for any tip. I just ask the wheelchair person to take me to the gate if I see that there is any food establishment close to the gate (there usually is). I walk the short distance to the restaurant and then back to the gate.

Seating advice:

1)Reserve a "bulkhead" seat NOW, way before the actual flights.

2)A seatcane is a MUST. I put the seatcane against the wall in front of me and elevate my legs during the flight. The flight attendant will make you stow away the seatcane during take off and landing because it could fly around and hit someone if there is turbulance.

3) If there are any extra seats on the plane, ask the flight attendant if you can move to a seat that has an empty seat next to you. You can then elevate your legs comfortably next to you. I am petite so I can even lie down, using the two seats! That is the best of all. Flight attendants have asked other people to move so that I can have an empty seat next to me.

Water advice:

1)You must have a note from your doctor if you want to go through security with a bottle of water. Otherwise, they make you through it away.

2)Instead of bothering with the above, I buy the water AFTER going through security. If you buy it after security, they will let you take the bottled water onto the plane. It costs a fortune at the airport though.

Luggage advice:

1)I pack light. I only bring a carry-on (a backpack with wheels) so I don't have to wait in baggage claim

2)If you fly in a tiny plane, be careful with the size of the carryon. If it is too big, at the last minute before boarding, they will take your carryon from you. Just in case, I keep all my pills together so that I take them out of the carryon if they want to take the carryon away from me.

Attitude advice:

1)I catch more flies with honey than vinegar. I try to be relaxed and pleasant to the flight attendants.

2)Try not to freak out the flight attendants or else they will refuse to let you fly. For example, don't say that you pass out. Just say that you have a circulation problem and that you get dizzy if you cannot elevate your legs during prolonged sitting. Keep it simple and look relaxed. (I almost got kicked off a plane when I said that I pass out.)

Rest advice:

1)I plan on one day in bed after I arrive at my destination to rest. After the trip, I rest over a weekend and then take a vacation day from work on the next monday.

Train:

It is so much easier to travel by AMtrak. I hate flying because of the lack of control. Flights get cancelled and other passengers sleep in the airport or rent a car to drive instead. I cannot do that. I try to travel during the times of the year that are not the busiest or when there is not snow. That reduces the risk of cancelled flights.

Good luck. Let us know how your traveling was.

Karyn

[Angelika_23]

I made it! I am here! I only had one episode where I had to lie down in the airport. I think it happened because I was late taking my meds.

My ears really really hurt now, they started on my second plane, I think it went higher than the first one. I wish I could get it to quit hurting.

I must be at the hospital at 7:30 am for testing. Fun fun!

Angela

[Mrs. Burschman]

Have a wonderful time! (Yeah, sure.)

But seriously, good luck. I hope your appointment goes well, the doctor is nice and you get something out of it! And I'm glad you arrived safely and in one piece (more or less.)

Amy

[Sophia3]

Angela

Glad you made it YAY!

Sorry about the ears.

Did you chew gum? sounds like your ears got plugged? Can you drink something hot? Try gently holding your nose as you swallow. If that does not help, can you handle low doses of straight Sudafed?

I would bring it up to one of the docs you see, ok? ear pressure can be a drag.

Anway, I am glad you have internet access...keep us updated as you see fit and give us a full repot.

[ajw4790]

Hope your appointment goes well! Good luck!

[deucykub]

Hi, Angela:

You're in my thoughts today! I hope your testing today and appointment tomorrow go very well and that you get the answers you are seeking. A good doctor can really make all the difference.

[Angelika_23]

Hi All,

My ears have improved overnight.

I had three tests this morning. The first one was electrodes all over, and some headphones that had static in one ear and a loud clicking in the other. It was more annoying than anything.

The next two tests were worse. The nurse took something like a pumice stone, rubbed the skin on my wrists and ankles raw, then put alcohol on them, and then attached electrodes. Then she put one on the back of my neck. Then she sent pulses of activity to the electrodes, one limb at a time. The left arm wasn't bad, it felt like tingling, no big deal. Then she did my right arm. OUCH!!!!!!!! It felt like someone was slamming my fingers in a door over and over and over. I asked her if she turned it up or something, and said no, she actually lowered it because it hurt me so much. Then we did my left leg, no big deal. Then the right leg. That did hurt, but not nearly as bad as the right arm. So now I don't know if that is normal or not, (I'm thinking not, but what do I know?)

I am getting sick on top of it all, all gunky in the chest and coughing.

I pray I will be okay flying back tomorrow. I really don't want to get back on a plane.

Angela

[Mrs. Burschman]

You did it once (on the flight out), you can do it again!

I had that ear test before, too. You're right. It was annoying. The other test sounds nasty!

Good luck getting home!

Amy

[Eli6596]

Hi,

I am so glad your trip went well. I use earplugs that look like corkscrewers. THey equalize the pressure. I think they are called "earphones" or something like that.

Karyn