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Everything posted by KiminOrlando

  1. I have never heard it called square breathing but I do this for migraines. It helps often.
  2. Maybe try compression garments and see if that helps. Some people say it helps them. Did your other doctor suggest increasing your salt intake? A lot of people do that, but check with your doctor. Hang in there. We have all walked this path.
  3. Honestly, I just put up with the weight gain. I had to choose between some functionality or looking good but not being able to take care of myself. I have also been told ablation is not a solution. I agree about finding a dysautonomia specialist. I went years before getting proper treatment.
  4. I'm occasionally on prednisone for autoimmune issues and it does not impact my POTS.
  5. @CallieAndToby22 That's good. I'm glad you are going for another opinion. It sounds like you have done your research and the place in Texas is going to be able to get to the bottom of it. Sometimes you have to push back. I can't believe they dropped the diagnosis of cancer on you then said do yoga. That must be doctor speak for, "We don't really know what to do." If you don't mind, please update us on how you are doing. I think that the autonomic nervous system is involved in bone marrow. I don't know if it would pertain to this. I hope they find that it is just something out of balance or a temporary result from a medication and it is reversible. I pray the doctors at Moffit were mistaken.
  6. Wait. I have thrombocytopenia and I don't have cancer. What happened now? Oncologists like to call stuff like this cancer, but mine wasn't. They did the same to my best friend. Is there more? Is your ANA positive? Are they saying you have PV? Did they just assume cancer because of thrombocytopenia and JAK2 positive? I am balancing on the edge, but it is because of my autoimmune/dysautonomia. Oncologists are used to treating cancer, so their habit is to default to cancer as a diagnosis. I know Moffiit and I know they have a good reputation. Orlando Health literally just scared the snot out of my best friend after her bone marrow biopsy in January. After getting a second opinion and requestiong additional testing, she doesn't have cancer, but they initially told her it was leukemia. Orlando Health was willing to do more research. I went through this last year with Florida Hospital. They are paid to be extra cautious. They also did more research. I felt like I was challenging him, but after discussing my research with him, he did his homework and came back with solid answers. If you have PV, my understanding is that there is treatment. It may be plasma pharesis (?), but I'm not sure. I'm sure a support group would be beneficial. Also, I think the standard of care has changed and they don't give any kind of sedation to adults for bone marrow biopsies. The last one I was scheduled for was to be done in a doctor's office which I thought to be barbaric. I managed to get out of it, for now. I hope you end up like us. We know we are more likely to develop cancer, but don't have it yet. Please let me know.
  7. I can't get you off my mind. I don't know if your employer knows about your dysautonomia, but if not, you may have to disclose to protect your job. If they know and you do lose your job because of COVID-19 complicating a preexisting medical condition, and COVID-19 was likely contracted because of the job, I would encourage you to contact a Worker's Comp attorney. I think professional advice would be warranted. Hopefully you recover quickly and none of this is an issue. Glad to hear you are on the mend.
  8. 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.
  9. 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?
  10. 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?
  11. 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.
  12. Coffee helps me. It doesn't make sense to me, but it works. I would think it would over stimulate, but it doesn't.
  13. Disney and Universal Orlando announced closings. Sea World can't be far behind.
  14. 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.
  15. There is now a confirmed Coronavirus case in my town diagnosed at my local ER. I'm officially staying home until this is over.
  16. @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.
  17. 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?
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. Cortisol is tricky. My doc said the test needs to be done at 8 am and can't be done if you have been on a corticosteroid in the last few months. I have always wanted my cortisol tested at noon, 4, 8, midnight and 2 am because I think mine are off, but this isn't a test that is done... at least that is my understanding. I bet if we all got that test there would be eerie similarities. I had a cortisol stimulation test that was normal. I think the system works, just the control for it is broken in me.
  24. It also diverts blood flow to digest food. Eating can cause symptoms on it's own. I get worse after I eat.
  25. I just saw my doctor last week. He said he thinks what I have is specifically a failure or overreaction of my sympathic nervous system. POTS and NCS all stem from it. He thinks the malfunction is from my autoimmune disease. My official autoimmune diagnosis is Undifferentiated/Mixed Connective Tissue Disease. I have tested positive for both lupus and Rheumatoid arthritis. What I took from my appointment was that he thinks my problem is autoimmune and the rest of everything are technically symptoms, not diagnoses. Has anybody else been told the culprit is their sympathic nervous system? If this is the case, wouldn't something like valium solve this part of my problem?
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