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Jyoti

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  1. @merkat30--this is familiar for me too. A couple of weeks ago, post Pfizer jab #1, I went into a terrible flare where my heart rate resting and in bed was in the upper 40s and when I got up to go to the bathroom or get some water, it rocketed up to 150 in half a minute or so. I am feeling much better now, and my heart rate fluctuations, while still pathological, are not insane. Yours are so dramatic. Were the fluctuations orhtostatically correlated? Or did your heart rate zoom up while you were sitting or lying down?
  2. @Abe--also, because of the above--BE CAREFUL! I would --if I were you--ask my chiro to trial some gentle upward traction and see what it does for you before you do anything on your own. Necks can go pear shaped in many different directions!
  3. More and more I am impressed by how much vital stuff is lodged in such a narrow channel and thus, how easy it is for something to go wrong.... Have you seen anything written by Jeff Woods on this subject? Might be of interest.
  4. T @Abe-- I use comfort trak cervical traction device , it is a huge expense, though well worth it for me. I pump it up to about 20 lbs (no more!!) and sit for about 3-5 minutes, let it down and rest a couple of minutes, then back up for a few, down again and rest all for about 10-15 minutes. Sometimes twice a day. I got to try this out (there are a few brands but this is the cheapest, I think, of this particular mechanism) at my PT's. It worked well at the office so she lent it to me for a couple of weeks, which helped me decide to invest. I don't know if you could find a place
  5. @Abe--yes, yes, yes. The weariness is sometimes the worst. Not just the fatigue, but the utter exhaustion with the whole situation, the unpredictability, the limitation and the relatively unrewarding exercises we go through to get help. I am so sorry that the last few months have been so bad. I get it, I know it. I know that blurry vision and muscle tension are just a segment of what you deal with, but I get a lot of relief for both using cervical traction. It is pretty amazing--I can go around all day not really aware of how blurry everything is--it just is the way it is--and t
  6. Let us know how it goes and what you learn. When did you get the jab? I got Pfizer on 3/19. It is scary to consider that this might have been a bad choice. But...was there a good one? Here are some initial results summarized from Health Rising: https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/
  7. I just got back from taking my 17 year old for her vaccine. She has really severe asthma, so we have all been worried about Covid in her case. She had to get her shot at a healthcare provider instead of a mass vaccination event because of her age. For the same reason I had to be there--to give consent. I was too sick to drive so we had to have someone else to drive us. If it had been anything else, I would have cancelled. The place was empty but the wait was endless. We sat/paced for an hour and eventually I just had to lie down. On the floor. My heart rate was through the roof.
  8. I find taking cool/cold showers has grown on me. Of course the initial couple of minutes are....breathtaking! But it gets easier. And I definitely feel better when I am not inducing tachycardia with the hot water. I'd also add @Nin that I had the covid vaccine a week ago as well and have been MUCH worse. Even after the 'immune-activation' symptoms (sore throat, spikey pains in lungs and head, heavy achey exhaustion) have lifted, I am finding that the POTS symptoms are MUCH worse still. I am normally pretty functional in terms of activities of daily living if I am careful. These l
  9. I agree! It is such a slog to find someone good and then if you do, you have to pray that you keep them. I moved across the country recently and have had to start from scratch too. The first doctor I met with --highly recommended to me--was so visibly annoyed with me and all my problems by the end of the initial meeting that I just moved on. It was clear that I was too complicated for her, and feeling unequal to it, she took it out on me. Not a good start. I don't know what your situation is @Sarah Teein terms of options/insurance, etc, but I usually (and I did not do this with the
  10. @Pistol--I appreciate the perspective of your experience, though the reality is not a particularly welcome one!
  11. Just reading all these posts and weeping. I am having a terrible day and enjoying (ha!) just about every one of the symptoms the rest of you have mentioned. It is so exhausting, so lonely inside a body that is being run amok, and I am really grateful to be able to know that I am not alone in this. So thank you all for sharing your miseries, your fears, your small successes and your experience. Some of these symptoms are indeed strange enough to make me think I must be making them up until I come across a thread like this where I learn that many others have had the same ones. It is n
  12. Thanks all for sharing your observations on this subject. It was affirming in that weird way we all recognize to know that something seen as universally good can be otherwise in our experience. Arm movements, arms over the head--yes @Pistol, @Sushi--these are definitely not good for me. And you are right @RichGotsPots, it can be done lying down. I think it can even be done mentally alone. If one wishes to. I think I was just feeling crazy--why would three days of 20 minute gentle and loving movement cause me to be considering the ER? So...thank you!
  13. I can't imagine anything more beneficent than qigong--it is gentle, moderate in pace, flowing, energy-moving. I love the idea of it--it just feels healing. But recently I have begun to suspect it is actually exacerbating my dysautonomia. There is, of course, the standing in one place that isn't good at all. But I have had a massive crash--bad enough to nearly send me to the ER--just a few days after re-starting a qigong practice. Seems kind of crazy, but as I am sure you all understand--when things go bad we have to comb through everything we have done, not done, eaten, drunk, thought....
  14. I have had the same experience Clair. I am not terrifically deconditioned. I can walk and ride a stationary bike and do some Pilates. I thought, and my doctor thought, the pool would be good for me and that sounded reasonable. I would get out after a short swim about as dizzy as I get, nearly pass out in the shower and be unsafe driving home. I had to admit, after a while, that delightful though it felt in the water, swimming was not something I could do safely to increase my strength or cardio wellness. The pool I swam in was relatively warm, but outside. I wonder how it might work, sw
  15. I recently moved and now live relatively near to Philadelphia. I am looking for a dysautonomia specialist from any of the usual backgrounds within a couple of hours drive. I have ME/CFS as well as (almost certainly) POTS and would love to see someone who had a rudimentary grasp of ME stuff as well as dyautonomic issues. I have been looking at Ramesh Khurana (I see someone said he is no longer taking new patients, but I am inclined to call his office and check) and Emmanuel Nsah, and wonder if there is any info not already shared on this forum that would help me find the right doctor.
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