Breathing during flight descent
 

A few days ago during a short flight I had some unusual breathing experiences as the plane started to descend:

• 1 hour of pressing on chest and labored breathing as though breathing reflex went from semi-automatic to manual mode

• Just before landing extreme dizziness and some blacking out feelings for a few seconds at a time

• Sudden shivering from cold when it wasn't cold towards the end

• Got off plane was difficult to put one foot in front of other at first

• Sat in connecting airport a little disorientated for quite a few hours

• On the next flight I took Mestinon and had no problems

This is the third time this has happened but the first times were vague enough for me to dismiss them.

Surely that can't be anything to do with oxygen depletion as 24 hours later I had a brain scan for research and the abundance of firing and wiring and proton activity means that clearly I have quite enough oxygen circulating around my brain! And I did do quite a lot during my trip without too many issues.....I am flying home tomorrow and hope things will go OK...

Anyone had any issues with flying before?

I have been flying two short flights once a month for last 4 months without any of the effects you describe from flight itself.

I am not a flight expert, but the pressure and oxygen level during a flight are different than on the ground.

http://www.who.int/ith/mode_of_travel/cab/en/index.html

This is well tolerated by a healthy person, but can pose a problem to someone with decreased reserves.

I would actually expect increased alertness after such an experience.

http://www.ispub.com/journal/the-int....LjKlYbwN.dpbs

I have needed oxygen on flights. I remember one in particular. I would have not have come off the flight had I not received it. Lucky me, I get to rely on the airlines for it. If I ever must fly (I don't unless threatened) and I don't get it, I'll have the rare opportunity to go from immediately from flying to six feet under. (And yes, I have almost blacked out on other flights, gotten off with extreme weakness on others).

I sort of doubt most people on here will be that bad off but I wouldn't guarantee my own survival on a flight with no medical support and even with it, it's a gamble.

I haven't flown since having symptoms for one simple reason - I have a very strong gut feeling it would make me extremely unwell. I have never really been able to find an explanation as to why that might be the case but I'm inclined to follow my instincts.

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! :BeamUp:

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: :partytime2:

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 :wink:)


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

Thanks....
 

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

Window of opportunity
 

:Wave-Hello:

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.

Flight problems before diagnosis
 

Hey, Dottie. I figured out in 2006 that I've had MG my entire life. I just adapted to everything physical. Did you have MG antibodies? If not, it could be a congenital myasthenic syndrome. They are genetic, not autoimmune. OR it could be MG since birth or teens. You should speak to your neuro about that. Do you have good photos from your teen years you could dig up and see if you had ptosis back then?

Yeah, it really does suck that we can't be normal. But those people were so nice to you. Maybe our disease is a good test for others to have. ;)

:hug:
Annie

Hi Dottie,

Thanks so much for sharing.....

Have you flown recently and did you have any experiences of medication immediately altering your flight experiences?

Anacrusis :hug:

Dottie,

So I´m assuming only people with respiratory MG problems get exacerbated weakness from flying, do you think that is about right?
I´ve flown with general weakness and didn´t notice a thing until it had spread and begun to affect diaphragm weakness................

Do you think like Annie says, once you are on the ground later on, things don´t necessarily show on the tests, or are you in fact saying that you got pulmonary testing immediately after the flight that affected you so much?.................

Yes I should know about trying hard enough!!! I´m the one that river rafted 21 days down that majestic Grand Canyon and a few years later could not even stir a casserole! Wouldn´t that just be a new thread full of fine examples of how people have been told just to try that little bit harder?!!!..........

You mentioned not being able to get up from your seat on this flight and being embarrassed, would you say then that you were mostly concerned about the physical effects on your body after taking this flight?


Anacrusis

Anacrusis, yes I concur that those of us with resp pblms do get this severity of weakness & possible dypsnea when flying.....can be very scary....I sure did quite often, not just flying but also when just going out to barn to feed my horses, & come back hardly able to walk or breathe.....& no tests for me then, testing is never done when we are in situations; make an app't, go in, sit & wait, then called in to see Dr...yeah right!! they seldom see us in a crisis.......

& yes, after that grand canyon flight, sure was concerned bout my physical being after the flight...had never had such an extreme reactional weakness & feeling of immobility before...always wondered if it being that small plane with those huge vertical windows had anything to do with it..or pressure pblms...didn't know 'til the dx was finally concluded! As I said before "hindsight really is 20:20".....

It certainly is difficult to deal with this disease, ppl do not understand if they do not actually see it happen....
Looking back, I bet that river rafting was one memorable trip....I felt that way going down the canyon on mules....had fun then.....

Hope you have a good weekend/holiday

Dottie

BTW......

Had an appointment with the phd head of neurology department at the hospital and just mentioned these problems and previous problems with breathing´in´

He said that if what I had was neurological then it would have shown on the electrophysiological tests. And I did not match with MG patients because I had had breathing problems during the day and not really anything at night.
He said that Mestinon can work in a placebo fashion when questioned why it was working so well with my breathing symptoms.

I sincerely hope that was the last time I have this trouble flying abroad and if I do get it again then it will be on the outward journey and goodness forbid not on the return flight back home.........

But I am allowed to call the hospital and have the chance to´prove myself´with a tensilon test, new SFEMG or some sort of blind Mestinon test or other if symptoms get worse again.

Thanks,


Anacrusis

PS
I didn´t bother to tell him I was scheduled for a pulmonologist appointment in a couple of days
because I´m quite sure he thought that it wasn´t necessary.

This is kind of my fear on flying now that I have been diagnosed etc.

I've flown..6 (6+ hour flights) since 2010, and haven't had any of those types of symptoms. I noticed on my last journey this past August that I got some leg cramps, maybe just from the uncomfy seats, but wasn't something I used to get.


But it's been on my mind on all of those flights. Flights are tough on the body because of those some-what sudden changes. It's one reason I don't really like flying to be honest, but sometimes they are needed lol.

I plan on flying 2 more times this summer (6+ hrs again), but I want to speak with my doctor and be sure. I also don't want my fear to stop me from doing something that I could actually be doing!

Good idea, like you say, to speak to your doctor especially if you have respiratory involvement in MG. And for those who have more severe symptoms of those muscles, they are supposed to get clearance from a pulmonologist before they fly.
2 years ago I could not fly because my muscles would not hold me upright long enough.
In the meanwhile you have a good flight :)

Had my´normal´pulmonologist test for future referencing.

The pulmonologist who is actually an open minded COPD and asthma specialist was interested in the following as well, and referred to them as neuromuscular problems:

Breathing problems starting a few years back with 9 consecutive antibiotic treatments
Breathing problems with use of sedatives, flying and during periods of muscle weakness.
He knew that it was rare to have restrictive breathing 12-16 hours after use of sedatives
but wasn´t surprised that with small rechallenge doses of sedatives there would be muscle weakness
always following restrictive breathing in that specific pattern.

I don´t think I had all the tests recommended on this thread but I had at least four (not MVV)

After a metacholine challenge test for asthma my muscles started trembling (especially the weakest ones)
then shaking quite violently and in the end even my head was nodding uncontrollably.

I have to go back for an exertion test and ultrasound of heart next week.

Good to know, thank you! I will try to get in with her before I leave (not until June and then maybe July).

I don't have problems with the muscles, and I'm not sure if my respiratory is really worse, or if it's always been at the level it is, I just didn't know it because I only recently started to see a pulmonologist (mainly so I have one in case I am ever in an emergency).


Thank you! :D