Anacrusis, You were lucky you didn't stop breathing. For people who get such severe symptoms while flying, it's recommended that you have oxygen while on a plane!

I researched this quite awhile ago because I knew I was having trouble while in an airplane. There's also a vignette in my book about it.

It doesn't matter if you felt better after resting awhile or after taking Mestinon. You need to find a pulmonologist and get checked out. There are cardiac conditions that can cause hypoxia or hypoxemia too. There are some people who have pulmonary hypertension and don't even know it. In order to determine if someone has it, a cardiologist will order an echocardiogram.

I have taken an oximeter on airplanes to see for myself what is happening. If I sit in my seat, I'm relatively okay. My O2 hovers around 88%. It can go lower. And my pulse increases, which is the heart trying to get me more oxygen.

When I get up to go to the bathroom on a plane, my O2 goes into the 70's. On one trip, I got a "little" chest pain and was dizzy. I even took photos of the "events" to show my pulmonologist.

The severity has to do with air speed, altitude and pressure. They save money on fuel by manipulating those things. And do you really think they want you to stay hydrated because the cabin air is so dry? Nope, they want you as hydrated as possible so that your veins and arteries will be as dilated as possible so you won't have a heart attack or stroke and screw up their schedule. Or sue them!

Good instincts, wild_cat.

Heat Intolerant, Have you ever had an echocardiogram? You need to figure out why this is happening!

Your brain scan while sitting still on the ground is a lot different than your brain - and other tissues - while up in the air, experiencing low O2!

Annie


http://www.ncbi.nlm.nih.gov/pubmed/12602449

http://www.ncbi.nlm.nih.gov/pubmed/18309903

http://journal.publications.chestnet...icleid=1060686

Isn't it nice of them to think about the pilots?

http://www.avweb.com/news/aeromed/181893-1.html

http://www.hyperbaric-oxygen-info.co...c-hypoxia.html.

Thanks Annie,

I really liked this sentence:

MG patients lose their ability to adjust to changes in the environment.

This is a very reasonable explanation one of my respiratory physicians gave me for the fluctuations of MG. He said that even relatively minor changes in barometric pressure, temperature etc. which occur in the atmosphere can lead to decompensation in someone with decreased reserves.

Let alone, the much more extreme changes that occur during a flight.

I had an EKG. I don't think it was abnormal but I was referred out for near syncope (in specific circumstances) where I got on the meds I am on. I could barely breathe off the plane when I had the severe respiratory problems. And I expect that earlier on, I just had a high pulse when flying. I would say that the near syncope when that happened was worst standing. And in addition to the oxygen, I "iced" to recover.

An ECG is not sufficient and that's not even my opinion but that of cardiologists. You need an echocardiogram, where they look at the heart, it's size, structures/valves, etc.

Do you have COPD? I just think that anytime someone has such severe breathing issues that they need to be thoroughly evaluated. And why is the answer always, "Here, take this drug!"

I like to use the example of when I had an undiagnosed B12 deficiency. If my doctor had given me Provigil for my fatigue and Neurontin for my parasthesias, I'd be awake and fairly pain free but I'd eventually be dead, since you can't live without B12.

If a cause isn't found, the condition will continue in spite of any treatment. And the treatment isn't always the correct one! Boy, am I grouchy today.

Annie

Sorry, yes, they did an echocardiogram and it looked okay.

COPD is progressive. My breathing had improved before meds anyway.

"Here take this drug" is indeed a disaster. I probably would refuse Provigil after similar types of considerations.

Here is some popcorn for your mood:

Thanks Steph, Alice, Heat Intolerant, wild_cat and Annie


You know, wild_cat, it was much easier to follow my instincts when symptoms were more predictable, progressive and physically dramatic. I seem to have lost that same instinctual ability the minute resolution began appearing regularly between all the fluctuations…

(I do have a good instinct about your upcoming appointment though )


Thank you for that very specific link Heat Intolerant. It must have been a pretty traumatic experience for you to need respiratory assistance whilst on board an aircraft. I can understand you not wanting to have to do anything that might bring back that experience again.

(If someone ever wanted me to inherit a rather large sum of money, I would donate a large part to MG research and save some for you to take a luxury cruise instead )


Annie, thank you for sharing your knowledge and all the experiences you have had on board.

If what I had was anything to do with diminished oxygen reserves then this would be even scarier than I originally had thought. I did register warning signals but in fact felt invincible and quite fearless even during the worst moments.

Anyway, I presume the pressing on the lungs must also be to do with feeling the higher pressure from outside the diaphragm during flight descent. I´ve never had that physiological sensation before MG type weakness began.

I did end up buying an oximeter and used it on board for the return journey. The levels fluctuated quite a bit (between 8 digits) so I´m not quite sure if I used it correctly or even bought the right one.

But what I am really quite sure about now, is the following –

• Something is not quite right if you are having any type of respiratory problems in-flight and post flight on modern commercial aircrafts

• Time is of essence especially at higher altitudes

• Even a slightly altered state of consciousness can lead to a false sense of security and well being altering symptom perception, judgement and response for appropriate action.

Have a wonderful day,

Anacrusis

I was surprised that initially no one would give me a referral to a pulmonologist on the basis of long term symptoms such as those described in this thread:

http://neurotalk.psychcentral.com/thread175640.html

So I didn´t think I would bother going back to the doctors again about it.
But when I did, I got another surprise by actually getting a referral in a few weeks based only on the symptoms I had on this and two other flights.

Anacrusis

I always say that you never know what you can do or have until you ASK.

Good, you need a THOROUGH pulmonology appt. A cardiologist assess someone for pulmonary hypertension but it's worth at least a question about that. It's something doctors don't always think of.

I hope they'll do all of the breathing tests necessary, including MIP and MEP. Good luck!

Annie

A different doctor and a different approach really helped....

My own doctor has been away and has a sub. I thought I would see if that could be used to my advantage and booked a new appointment.
I briefly described symptoms from my last flight, said it had happened on 3 different occasions but not whilst under the influence of Mestinon.
I then produced a copy of pulmonary tests for MG that Alice had described in another thread, patted them down on the doctor´s desk and stated:

´These are the tests that need to be done - I personally have no idea what these tests are, do you know how this can be organized?´

The appointment took all of 5 minutes.....

Have felt so well lately though that right now I wonder if the tests would only pick up something if there were triggers like antibiotics,
sedatives, being on board an aircraft, or overusing my vocal chords & muscles.

Normal tests are also a good starting reference point with any future exacerbations...


Either way

Normal tests that correlate with feeling good is the best thing you can hope for

Normal tests are only a problem if you are not feeling well.

And yes, it is very helpful to know your normal, so that there is something to compare to, if you ever do less well in the future. It is also good to have someone that knows you and your normal which you can rely on, if things deteriorate.