Anyone Told Not To Fly?

[ariella]

sorry for the brevity, pressure in head, can't sit at the computer.

looks like it's unlikely I can get proper care for my lyme here. It is an 11 hour flight to NY. Last time my POTS was out of control as it is now, the autonomic doc advised me not to fly.

Anyone given similar advice?

thanks

Ariella

[Dizzy Dame]

Yes. I was told that flying could be dangerous the last time I flew. I went and got IV fluids before getting on the plane, and had a seat in first class so I could keep my feet up.

I did alright for the first three hours (it was a 12 hour flight), but when we hit really bad turbulence, the bouncing made my POTS flare for some reason and I started to throw up almost uncontrollably, then I developed severe chest pain and difficulty breathing.

I was put on oxygen and they paged for a doctor on the plane, and forutnately there was one. I was kept on 02 and monitored, but we almost had to divert the flight. It was absolute **** and I thought more than once that I was dying.

However, I did survive the flight and after about 2 weeks in bed, I began to feel a bit better.

Is there any way you could fly with 02 and an IV? I think if I'd had those two things from the beginning I would have been much better.

I can relate to what you're going through right now...I was living in Hawaii and had to fly to find doctors as well, so it's kind of a catch-22. If you do fly to the US can you stay there for awhile? I'd be worried that flying there and back over too short a period of time would be really bad for your health.

Good luck! And I'm sorry if this reply wasn't reassuring, but hopefully you won't have the same problems I did. I was very, very sick when I flew and really had no business in the air. Hopefully you're in a better spot than I was.

[ariella]

very bad spot actually. possible encephalitis from the lyme.

ID dr. rolled her eyes at me today and said that there are thousands of people with positive lyme tests who actually don't, would only like to believe they do. Then she admitted to having no idea how to read the western blot results, and said she is incapable of reading anything that doesn't go through her own lab. Next!

IV and 02 not a bad idea. My whole family is in New York, and I would stay with my parents. I have 5 kids, though, and can't see myself leaving for more than a week.

Using 02 now for POTS, as the medicines aren't working, it's usually helpful.

I need to think this through and my head feels too darn swollen to let me think. Still waiting for GP to answer my "urgent" call.

thanks

[Kimba]

sorry for the brevity, pressure in head, can't sit at the computer.

looks like it's unlikely I can get proper care for my lyme here. It is an 11 hour flight to NY. Last time my POTS was out of control as it is now, the autonomic doc advised me not to fly.

Anyone given similar advice?

thanks

Ariella

I just saw my POTS Dr. last week (She is very knowledgeable and good.) I like to travel to asked her about flying. She told me that flying itself was not what was bad, it is all the stress surrounding travel in general. (Little sleep, hectic schedules, carrying heavy bags, rushing through airports, etc.) She indicated that as plane cabins are pressurized, that they themself pose no risk.

She suggested to be smart regrading layovers, flight times, checking baggage vs carry on, etc - those would be the things to pay attention to.

Good luck...I would leave myself some "down time" immediately upon arrival if possible so you can have some time to recover if necessary.

[nadine]

ariella-

Sounds like you are in a tough position regarding taking possible trip. For me the flight was the beginning of my nightmare, but you have probably made other trips- how have you done on them? I am not sure about the pressure comments in the cabin- It deft. had an affect on me- no question about that.

I would be concerned about the pressure you are feeling in your head and flying- what do they think is cause?

Is this an ongoing symptom for you or something new? Is it from the suspected encephalitis?

Anyway, good luck and I must say trying to do all this in one week seems like a lot-

Keep us posted

[Sophia3]

My doc hasn't said not to fly but I haven't since 1992 and KNOW better than to risk it. Even though cabins are pressurized, MANY OF US feel the effects of altitude. Here is a cut and paste to explain that a bit. However, if yOU MUST FLY, make sure you have notes from the doctor that you may need access to the airlines oxygen. Just be prepared and that isn't easy with todays security stuff!?

Effects of cabin pressurization on the human body

Ear and paranasal sinuses - One needs to adjust to the pressurized cabin air from the beginning. 1 in 3 passengers suffer ear discomfort, pain and temporary hearing loss on takeoff or landing, called "aerotitus" by the House Ear Institute in Los Angeles. Rapid changes in air pressure cause the air pocket inside the ear to expand during takeoff and contract during descent, stretching the eardrum. To equalize pressure, air must enter or escape through the Eustachian tube. "If a passenger has serious congestion, they risk ear drum damage", says Sigfrid Soli, Ph.D., head of the HCSD Department at the HSI(?).

Tooth - Anyone with intestinal gas or gas trapped in an infected tooth may also experience Barodontalgia, a toothache provoked by exposure to changing atmospheric pressure.

Pneumothorax - Anyone who has suffered a pneumothorax is recommended not to fly (even in a pressurised cabin) for at least 1 month and should obtain an x-ray prior to travelling.

As well as the more acute health effects experienced by some people, the cabin pressure altitude of 8,000 feet typical in most airliners contributes to the fatigue experienced in long flights. The in-development Boeing 787 airliner will feature pressuration to the equivalent of 6,000 feet, which Boeing claims will substantially increase passenger comfort.

Some people may still experience symptoms of altitude sickness despite the cabin pressure.

[Patricia Gallup]

Hi, my daughter and I (both POTS) have never been told not to fly. We've been on dozens of flights, the longest ones being 8 hours, so 12 could possibly be harder, but we've never had any issues other than fatigue about the 2nd or 3rd day AFTER the flight. And more fatigue upon returning home, not debilitating, just worse than usual.

My daughter gets tubes placed in her ears as she gets negative pressure in her eardrums while flying and she does wonderfully. (Used to cry almost the entire flight as a child, so the tubes are a true Godsend!)

I don't know about all airlines, but I know some do not allow oxygen as it can/could explode during pressure changes, others only allow oxygen provided by them. As of last year they did pass a law that certain airlines would accept a couple specific containers that passengers could bring, however with the recent security changes I have no idea what the rules are. Obviously medical proof is necessary.

Is it possible that you could "test" your ability to fly by taking a shorter trip somewhere?

Hope you are able to figure out what's best, and get there safely. We too, travel for better medical care, and it's always been worth it. Vacations are also a great break from POTS too. We'd never give up flying as it's actually much easier on us than sitting in cramped vehicles.

[ariella]

thanks folks

well, everything is at its worst now. We do not know what the pressure in head/stiff neck is, but encephalitis has not yet been ruled out (and a strong possibility with the positive lyme test). We've been ignoring it and taking advil. Going to the doctor first thing tomorrow

If I was baseline now, I would consider the flight and ask for 02. Far below baseline for now.

My brother is getting married in November, going to try to get someone to give me some oral abx until then. I was in an elevator today, went 4 floors, and felt very very bad.

Hope this plan works. Very foggy now, having a hard time thinking.

[Sophia3]

sorry you are feeling so poorly.

I have to try and avoid elevators when I can..the mild G- Force can trigger many symptoms.

I hope you get some relief from your situation and a doctor who can help you.

Sophia

[marnian]

It might be a stretch, but is there any way to find a nurse or doctor to fly with you from Israel to NY? There should be a reasonable number of medical professionals that fly that route, but finding someone might be hard. At least in Baltimore (where I live) I'd start by calling Jewish Family Services and explain my situation. With the proper care before, during, and after the flight it might be easier on you to fly.

[Suzanne]

I am so sorry that you are feeling so bad My POTS doc said that flying affects me due to the dry air in the cabin, so be sure to take plenty of fluids. This may be tricky now, but with a doctor's letter, may be possible. He also said to move around, wriggle legs etc to help the blood to flow in the legs. I know i always feel terrible for at least 2-3 days and longer if it is west to east. But if I was really sick and thought there was a chance of help at the other end, I would go. I am a mum too and it is so hard to leave kids, but they will survive. They need their mum as well as can be. Take care.

[Susan]

sorry for the brevity, pressure in head, can't sit at the computer.

looks like it's unlikely I can get proper care for my lyme here. It is an 11 hour flight to NY. Last time my POTS was out of control as it is now, the autonomic doc advised me not to fly.

Anyone given similar advice?

thanks

Ariella

[jhjd]

I'm flying to DC next week for work and am actually just coordinating with my docs (MVP/Autonomic Disorders Clinic in B'ham, AL) about what a letter to the airline needs to say. One thing they're writing is that I need lots of fluid throughout the flight, since you now have to ask them for it and can't just bring a bottle on yourself anymore. Also, I'm planning on calling the airline and faxing a copy of the letter to them ahead of time so they'll be forewarned about the fluid, possible fainting if I'm in line too long, etc. I'd say anybody who's flying now (or even possibly just going to be in a strange city, particularly if you'll be by yourself) needs to get a letter. For one, you'll get the help you need. But also, if you start acting 'strange,' you want proof it's medical and not just craziness.

[ariella]

Good news is that my dr. today approved oral abx to get me to a place where I can fly to seek the opinion of an LLMD. Hoping it works!

Thanks everyone!

[Laura]

Hi Ariella, I am so sorry that you've been feeling so badly. I hope the abx will help to stabilize things for you. Please keep us posted on how you are doing. Laura

[DancingLight]

Ariella,

I am so worried about you. You have really been struggling so much lately...and your symptoms are progressing so much.

I wish that we had instantaneous travel like in the children's book The Twenty One Red Balloons (or something like that, brain block on the exact title).

I hope that the abx will help you....what will you be taking? I hope you will be able to tolerate them.

I also hope you will be able to make it to the states to see an LLMD...and mine is in NY if you would like to discuss further, let me know....

In the meantime, I am thinking about you.

I do not know about the flying, as I have not flown since getting POTS. I don't know what I would do if I had to.

Also, I still have not had energy to check out the Jewish music site you sent me, but I will as soon as I can. I am anxious to look around and make a Harry Hannukah wish list!

Love, Emily