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Doctor isn’t helping…would like more info/Education


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Hi friends,

I have met with an autonomic specialist who was a NP. She was very kind- however, she did not provide me with much information on autonomic dysfunction. Specifically, if this condition is considered fatal. I have done reading on how important the ANS is and how it controls basically everything in your body. 
I am terribly frightened and can’t seem to get past the anxiety over this. I constantly feel like I am suffocating and I cannot fully breathe. Although, all of my pulmonary functioning seems to be fine (lungs are in good shape). It is more of a “sensation” of not breathing and it causes me extreme anxiety bc I feel like I can’t breathe and the oxygen levels are 95+ on the pulse oximeter. The connection from the lungs to the brain seems to not be working well, and it makes my brain “think” that I am not breathing because I can’t “feel” anything. 
I hope that I didn’t say something wrong on here. I am just trying to find information from actual real-life experiences and resources within the dysautonomia community. 

I have become fixated on my breathing and monitoring if I can feel it or not, 24/7. If anyone can provide more information on if dysautonomia is life-threatening, I would greatly appreciate it. 
thanks for the help! 

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Sorry you are still experiencing this symptom.  :(

Glad you saw a specialist.  Did this specialist at least inform you as to your diagnosis?

There are multiple types of dysautonomia.  So I think maybe the first step would be to have a more refined diagnosis if possible.  For the vast majority of people and even more so for young women who have dysautonomia, it is not progressive or fatal, but rather chronic, and can be disabling, especially without treatment/management.  Symptoms can wax and wane -- with times of flare up and times of much better health.  The good news is that for many, symptoms can improve over time.  Again it does depend on the cause, and the type of dysautonomia,

You can find information about the various types of dysautonomia in the information resources (tab at top left on the website here).

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