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RecipeForDisaster

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About RecipeForDisaster

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  1. 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.
  2. I provided a link, but it’s Hypocapnic cerebral hypoperfusion.
  3. I guess you can! It’s amazing to me that I could over breathe at a rate of 6. It is never crazy deep, although my body would like me to. I’m not anxious in the slightest, it’s just an air hunger thing. It goes with my dysautonomia issues.
  4. I was also trying to relax myself from my irritation at the doctor trying to argue with me during the test. So, I breathed as slowly as I could.
  5. in my case, I am forcing myself to breathe that slowly. I have bad air hunger, and my body just wants me to gasp... I think my normal rate would be 20 at rest if I let my body do that!
  6. 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.
  7. I love these ideas. I’m going to try to meet each of my parents for a short walk as they are within a short drive. Then I plan to hold a Zoom meeting with my sister's family and hopefully my parents, during dinner. I have a fancy dinner planned just for the two of us, but I’d love to swap food.
  8. Oh, and this is greatly improved with IV fluids...
  9. I find that low pulse pressure correlates with how badly I’m doing, but I don’t see a lot of people interested in it.
  10. All I can say is I feel your pain.... haven’t found anything much on testing but I’m on lots of meds anyway. Genetic testing does show a novel abnorality. I’m doing autonomic tests again tomorrow. Hopefully the midodrine will help - I find it does to some extent, I just can’t handle a big dose.
  11. I use 2L, usually LR or 1L of NS and one of LR, at about 125mL per hour. I run them as slowly as possible to finish the infusion while I’m up, usually 5am-9pm, dragging a pole the whole time.
  12. I had several tests done... one for Familial Dysautonomia is
  13. This is one of the things that is the most bothersome to me - I sleep so lightly, it takes nothing to wake me again and again! It could be a little sound, an itch, temperature not perfect... it’s awful. I sleep "well" as in I can fall asleep and have good hygiene, but there is not much that helps this problem.
  14. Interesting! I found a company (Prevention Genetics) that will do it for about $600. I’m not sure if any is covered my insurance. I have a geneticist who is brilliant and knows these genes, but hasn’t been answering me. This was going to be just this specific area, for familial dysautonomia, not the whole exome. I’d be willing to do that if someone was interested.
  15. Wow, that is impressive! I have not gotten anywhere with finding a company to "fully sequence" it. I don’t have the usual mutation associated with familial dysautonomia, but I do have the variant on it.
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