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KiminOrlando

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About KiminOrlando

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    Female
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    Orlando

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  1. That is good to know. I hadn't pursued it because I was afraid once a doctor saw one of those meds on my chart, they wouldn't take me seriously. I had a hard enough time as it was.
  2. I have the opposite happen for me. I can drink a large coffee and immediately take a nap. It stops that buzzing feeling in my body. It is totally nonsensical. I am wanting to try it for headaches and my hands. I still think it is probably your sympathetic nervous system, I just don't know what to do about it. I have heard some people take valium or an antianxiety med and it helps. I would love to be able to try something like that, but no doctor has been willing to prescribe that. Have you talked to your doctor about that? Are they open to try meds or do they just leave it as something you have to deal with?
  3. I have a theory on this, but it is just a theory, not actual medical information. I believe HyperPOTS typically causes an overly responsive sympathetic nervous system. The sympathetic nervous system triggers vasoconstriction. Does it cause hypoxia from decreasing blood flow? You felt better when they gave you meds that calmed your sympathetic nervous system. My hands go numb, cold and purple from vasoconstriction. I've been planning on an experiment when I get a chance. I am going to try to use caffeine (vaso dilator) to see if I can make my hands better. I bought some caffeine pills. Anyone tried to use caffeine to calm symptoms?
  4. I was also told not to take it and lie down so I was not to take it close to bedtime. Is there any chance you misunderstood the instructions? It might be worth double checking exactly how your doctor wants you to take it.
  5. Coffee helps me. It doesn't make sense to me, but it works. I would think it would over stimulate, but it doesn't.
  6. Disney and Universal Orlando announced closings. Sea World can't be far behind.
  7. Orlando is going to get ugly. They haven't closed the parks yet, but I expect them to. Her approach is foolish. Good helps those who help themselves. She is not helping herself. Most likely she didn't buy travel insurance and that is driving the decision. I hope airlines and the parks allow people to re-book without fees. The corporate hotels should do the same. Franchised hotels and small hotels are going to have trouble getting through this. Their employees are going to have no income. Our local food banks are going to be bare because of it. Our service based economy here in Florida is very unstable. It was very rough after 9/11, but I think this will be worse. I hope I am wrong.
  8. There is now a confirmed Coronavirus case in my town diagnosed at my local ER. I'm officially staying home until this is over.
  9. @toomanyproblems I'm very interested. Please keep us updated. I think they also have antivirals they use for shingles. Curious if that is helping. I was reading about Plaquenil disrupting replucation of the virus. It didn't sound like a 'cure' but maybe a preventative or to help make it a milder case. So interesting that you have access to an infectious disease doctor. Thx.
  10. So glad you are in the medical community. Maybe you can answer my question. I am hearing Plaquenil (anti-malaria drug) has been effective in treating Coronavirus. This is commonly prescribed to Autoimmune disease patients. I take it for RA. Have you heard anything like that? I know many people on this site also have autoimmune diseases and are very likely taking Plaquenil or the generic equivalent. Are we accidentally taking the cure?
  11. I don't think dysautonomia is a significant complication to Coronavirus. It will be a pain, just like when we get the flu and it will take a month to get over, but personally, I don't see dysautonomia alone as a higher risk for mortality. IMO, if you have lung involvement from asthma, autoimmune diseases, are on immunosuppressants drugs, or have some other complication other than POTS type illness, then I think you are in a higher risk category. I would think being short of breath from tachycardia isn't considered lung involvement. It feels terrible, but it doesn't restrict oxygen. It wouldn't hurt to buy an O2 fingertip monitor just to keep track of stuff. They are relatively cheap. Keep in mind circulation impacts readings, so you can get false low O2 readings. I would still clean everything, limit outings, use Clorox wipes and hand sanitizer because the flu is brutal for us, but I wouldn't panic. I live in Orlando where there are tons of international tourists. We are likely about to go on high alert. We have been asked not to travel internationally or to self quarantine for 14 days after. They haven't stopped travel here. Disney is still up and going. If Disney shuts down, this will be when corporate America starts to take this seriously. I'm supposed to get lab work done at Quest tomorrow. I don't plan to stay home, but I'm also not going to roam all over town. You couldn't pay me to go to the tourist section right now. I'm not insulated from it though. My next door neighbor works at Disney. I don't know that I assuaged your fears. I take Corona seriously, but you and your doctor are the only ones that can assess your risk. My risk is elevated due to age, immunosuppression, and Interstitial lung disease. I think I will be ok. Hope this helps.
  12. Have you been to a gastroenterologist? Have they ruled out gastroparesis by doing a test where you eat eggs (or something) with some kind of nuclear reactive powder in them? They follow the glowing eggs through your system for several hour to make sure your stomach works properly. It took 4 gastroenterologists and 12 years before I got the test. Doctors kept telling me to increase fiber, but turns out that makes my gastroparesis worse. I didn't have luck with a dietitian, but it was because I had been misdiagnosed. I hope you find answers for your situation.
  13. Are you in the U.S.? If so, I suggest going to see an independent fee based Certified Financial Planner. Often they will give you a free initial consultation. There may be trusts involved. You are wise to start thinking of this kind of thing. I'm in the process of trying to do this, but mostly for Medicaid planning.
  14. My antimitichondrial antibodies have been elevated, but they change. My SM was positive, but now negative. I think there is something funky with the immune system that seems to throw out random antibodies. I'm seeing an allergy and immunologist tomorrow. Maybe I will ask about this.
  15. I don't believe insurance companies pay for these, at least not in the U.S. My doctor told me to put in a pool, but that isn't going to happen. You might be able to find a used one at a sports resale shop or online.
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