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Does This Sound Reasonable?


maryfw
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I have posted about this before and I seem to be unique in this but I think I am starting to understand more about what my autonomic disorder means to me. When I fly.....on the take offs, the rapid acceleration and change in pressure and altitude makes me shake violently and almost pass out. Even in a car on a really quick take off I do this (when someone is driving because I never take off quickly after having 2 bad experiences). I have never been able to hang unside down as a kid from the monkey bars because of this.

So this is what I think is happening. When people like us stand up our blood vessels dont constrict like they should and the blood pools in our legs and we lose bp and blood flow to the brain, right. So what I think is happening to me isa rapid and extreme loss of pressure and I am shaking so violently in the upper parts of my body because of that. Does that seem right? Should I be concerned enough to not fly again. When I tell my doctor about his they never seem to get it.

thanks for listening to my unique situation.

mary

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You are most welcome! :)

That sounds like as good of an explanation as anything.

I have a little bit of the same issue, though not as extreme. I always feel really sick when I'm in a car and it's stop-and-go traffic. Something like my body just doesn't seem to compensate very well for the lurch -- lurch -- lurch.

Amy

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Interesting sideline to this: The Blue Angels, Navy aerobatics flight team, are the only ones of such teams that don't wear G-suits to compress their lower body on extreme accelleration or those "fly straight up into the sky" moves. Instead they contract their abdomen, gluts and thighs to stay conscious and prevent pooling. They say the G-suits tend to get in the way of the controls (they inflate I think).

We've been trying to get someone from the Navy to teach these exercises to our support group. But I think you get the basic idea and it might help. Some of us do pilates to strengthen those same muscles.

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Mary, have you tried wearing compression hose during a flight along with salt and fluid loading before hand? If not, you may find that to be helpful.

Pat, that is one of the more shocking things I've ever seen. Did you see that a woman's name was on the patent?! I wonder if she actually thought that would be an ideal way to give birth?! :)

Rachel

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Quoting Amy:

I have a little bit of the same issue, though not as extreme. I always feel really sick when I'm in a car and it's stop-and-go traffic. Something like my body just doesn't seem to compensate very well for the lurch -- lurch -- lurch.

Ditto!!! I ALWAYS have to drive if I'm riding with anyone but my husband. (I have him trained! Hee hee!) I can't stand to ride with the lurching and the acceleration. BLECH!!!

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I have learned to drive also and learned it the hard way. In my work I have to go out on business calls and sometimes with others, usually men. men seems to have a heavy foot when driving. I had a very embarrassing episode so now I just tell them right off that I may pass out if they take off quickly from a stop and they usually drive very slow. the last thing they want is a woman passing out on them in the car. If at all possible I DRIVE.

mary

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I tend to lurk on this board but I had to post to this topic...

Mary.... According to my mom I do the same thing as you upon take off and landing when I MUST fly. My mom says that my eyes roll in the back of my head and my body convulses, then I pass out. She usually lays me on her lap so that it looks like I am sleeping. I also get a SEVERE pressure headache and my ears refuse to pop (and we live at 8000 ft, 40 mins from Denver). Once I passed out on my way to the potty and was unresponsive and they nearly deverted the plane to send me to the hospital because the flight crew was so spooked. Luckily my mom explained everything to the ground crew.

In addition to dysautonmia I also have chiari malformation (decompressed), and cranial cervical instability so we've always wondered if those were causing the severe plane issues to some extent.

Unfortunately since we don't have any competent neurosurgeons in our area to deal with my head/neck (I'm only 18... not letting just ANYONE fuse me together seeing as I have to live with this for a while) we have to travel out of state.... And I don't really do much better in the car. I perfer to get it over with on the icky plane ride then suffer through a road trip...

Alexa

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Wow. It is nice and sad to finally hear someone who knows what I am going through. I guess I should get checked out for the other stuff you have too. I am now terrified to fly. The last time I fly I clawed my husband up on his arm (without even knowing it) and try my best not to scream but I make a fool of myself. My seizure like symptoms dont seem to be as severe as yours but it is bad enough.

mary

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I have often tried to describe it as if my brain is not attached in my head or like my brain is sitting in a bowl of water and is getting giggled around. anyone know what I am trying to describe?

mary

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  • 2 weeks later...

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