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I have not heard from the doctor after my repeated TTT, but I did get the report, and it sounds like I have HYCH. I’m glad I might be on my way to a diagnosis (although it doesn’t explain half my issues including super low BP at home), but it kind of blows that it would be something so unusual that even I hadn’t heard of it. It doesn’t sound as legitimate as I’d like, you know? I know it’s real, but man, I don’t think it sounds that serious to the average person. I don’t know that there is any treatment, particularly that I’m not already doing, but I know for a fact that I can’t breathe less. I was breathing at 6 per minute for most of the test!! I’m always fighting with my body because it wants me to gasp (air hunger) and so I control it and do square breathing or other exercises ALL the time. 

The doctor came in to argue with me about redoing painful biopsies that weren’t going to be covered by insurance, and which I know wouldn’t be valuable, so my BP was literally twice what it was earlier at home. Plus, I had to go into the hospital alone, and I was a bit lost, and also had to travel into a scary city. If my BP was at its usual, and I had the 37% decrease in cerebral perfusion that I did during the test... I can’t imagine.

I’m hoping someone else here is familiar with this! It’s not too different from OCHOS but it’s not the same, either.


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Are you sure the slow/deep breathing you do is helping?


"It doesn’t sound as legitimate as I’d like, you know? I know it’s real, but man, I don’t think it sounds that serious to the average person."

I think many on this board can relate, with POTS as well

Maybe you can just say you have a form of dysautonomia and you don't want to talk about it.


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Well, it’s essential for me to sleep, and sometimes it helps my heart rate or pounding. I feel worse if if I let myself "pant". I feel like I’m hyperventilating if I do - fast shallow breathing. 


Yes, I can call it dysautonomia. It’s just awkward because if most anyone has heard of that, they think POTS is the only one. This seems a lot more weird. It also doesn’t seem to explain half of my issues.

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