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Everything posted by yogini

  1. If you are interested in biofeedback, it might be helpful to look into a more formal method that has been researched and shown to be effective. There are machines you can buy, apps for your phone, etc. There might be some info on posts in the forum - but better info out there on google, etc. The idea is that if you do the same exercise over the long term, your HR lowers a little in average - and then you can also use the same techniques to help manage in a flare.
  2. It's complicated. Your doctor could best explain the mechanism but usually dysautomia symptoms tend to act up when the brain isn't getting enough blood, which and happen in any position. Both the HR and BP drop during sleep, combine this with dysautonomia, not a great mix. Some patients even faint in their sleep.
  3. Everything you described is fairly common including waking up from a dream to have all of those symptoms and more in the middle of the night. You mentioned an echo - make sure you get a full cardiac workup - stress test ECG, etc. Through these tests your cardiologist can tell you if you are at risk for a heart attack and when to go to the ER. Most of us who have been cleared have been told there is no need to go. CBD can lower your blood pressure. Have you checked with your dr whether it makes sense for you? Are you measuring your blood pressure and HR when these symptoms happen?
  4. When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic. I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal.
  5. A risky surgery with neck damage and no guarantee for improvement doesn't seem like a great option. If other people are starting to try the surgery, it might be better to let them be the guinea pigs. Not sure how long you've had dysautonomia but most people do improve over time. It takes trial and error - sometimes years of trying different things - but surgery isn't your only option.
  6. Glad you are under the care of your doctor and will be getting meds. High blood pressure for a few seconds probably isn't as concerning to doctors as sustained high BP. Also it is a normal response to have BP increase during activity - so that might not be the best time to measure.
  7. It's been studied. See for example here: https://www.ncbi.nlm.nih.gov/pubmed/19015909
  8. You are correct in questioning whether florinef makes sense for you. It is not an easy drug to go on or go off. 6 weeks seems like a long time, but it might make sense to just wait. Personally if I had high BP and I were just starting my journey, it wouldn't be the first drug I'd want to try.
  9. Thank you! I have been looking for something which isn't an aerosol and which isn't heavy to carry around
  10. Um, the only person saying that he invented the surgery is him. You’d think they’d have at least quoted his doctor if it were true, and that it would be written up in all kinds of medical articles . Don’t think I questioned his illness or recovery in any of my posts above, so not sure why you’d ask that. 🙄
  11. And you believe the used car salesman when he's the one that says he invited a surgery, lol???? Let's agree to disagree.
  12. He has a rare adrenal condition called bilateral adrenal medullary hyperplasia so the POTS treatments would not work. I'm guessing he is trying to promote his business and career as a motivational speaker through the hyperbole. It is a lot more interesting to hear a speaker who "invented a surgery" than one who simply navigated his way through the system to improve from a rare illness.
  13. I agree he was his own hero, and it is always inspirational to hear about anyone's recovery. But I've read dozens of stories about people recovering from dysautonomia over the years - all of whom were their own heroes, came up with their own treatments and went through incredible struggles - but have never seen a story presented in this in this tone. "I discovered a category of illnesses", "I invented a surgery", etc. I found it a bit off-putting and strange.
  14. Article says he has bilateral adrenal medullary hyperplasia.
  15. If your symptoms sound similar to the person in the article, it might make sense to look into this condition (or related conditions). But even he kept his adrenals. As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.
  16. You should contact Doug Lindsey and see if he can connect you with his doctors. He says he's dedicated to helping other patients. I'm not sure removing the adrenal glands make sense - but perhaps there is a way to slow them down that your doctor isn't aware of.
  17. He got dysautonomia a few years before me. At the time of my diagnosis, there was already this forum and a few other forums that have been around for years. Dysautonomia as a condition has been around for quite a while. I could believe that he didn't get the right medial advice, but as soon as he made the connection to autonomic disorders, his story gets strange -- watch his Ted Talk. We all have to take control of our healthcare and guide our doctors, but none of us have discovered this condition ourselves or a cure.
  18. I am not sure what to think about this article. Glad the patient is better and helping people but doesn't sound totally medically accurate. https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself
  19. Most of us with dysautonomia when symptomatic spend all day in bed or on he couch. Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia. I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.
  20. If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia.
  21. Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing). Checking it might be making you worry needlessly. Changing antidepressants is rough on the body, so that also might be factoring into it. Hope you feel better soon.
  22. Orthostatic hypotension if there is a sustained decrease in blood pressure when standing.
  23. That's awesome. If you keep doing it I am sure you will continue to improve. maybe if you add in the lean against the wall exercise regularly and try to increase it-even by 30 second increments - you might be able to improve your tolerance to being upright over time.
  24. How long have you been doing it for? And are any of your other symptoms better - like sleep, etc.? Have you tried the leaning against the wall exercise?
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