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About yogini

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  1. In general dysautonomia is dysregulation of the HR and BP. Many of us that usually have low BP and high HR get high BP and/or low HR sometimes as part of our symptoms. Higher BP often coincides with low HR, because the heart works harder to pump blood. (The reason many of us get a lower HR when we take in more salt.) This incident doesn't seem too unusual for dysautnomia - even the range of your high BP doesn't seem sky high - but it is best to discuss with your doctor. Also note that if you drank coffee with caffeine that would impact your BP.
  2. Maybe keep a written record of your BP and if it drops too low you can start the salt again. You could also take a salt pill every other day, instead of every day if your BP was getting too high.
  3. It depends on what is going on with your digestive system. It might work for some people but not others. Ask your doctor who prescribed the xanax.
  4. The original one is on sale at a few places on Black Friday. Still expensive but makes me feel better about splurging. 😁
  5. I was wondering whether anyone has tried weighted blanket? They can be really expensive but heard they help with sleep and other ailments. I have severe insomnia sometimes and would appreciate hearing anyone's experience whether this helped with dysautonomia symptoms - mine are always worse when I don't get sleep. Also there are so many different brands and a range of costs -- so if you really like your blanket would love to know the brand. I am leaning toward the Gravity Blanket which is $250 - since that seems to have the best reviews.
  6. I feel like I am swaying slightly from side to side (or up and down) even though I'm not physically moving at all. This has historically been one of my worst symptoms. It was really scary and confusing at first - and it was constant. Now it only happens sometimes and I am so used to it that I barely notice. This symptom definitely got better as my dysautonomia improved and exercise (even practicing walking) helped a lot. Check with your doctor but there is a good chance this symptom is dysautonomia and not another condition.
  7. Hi, there are many medicines and other treatments and lots of information on the Dinet website which you can print out and bring to your doctor. There is also a list of doctors that have experience in treating dysautonomia. If you post about your symptoms and diagnosis on the forum in a separate post, people can also share their ideas on what might help you. Florinef can take several weeks to take effect. But if your blood pressure is low, have you tried compression hose?
  8. Finding the right treatment for dysautonomia involves a lot of trial and error. Most treatments only work for a small subset of people. While midodrine definitely works very well for a subset of dysautonomia patients what works for someone else might not be right for your body . If you saw improvement florinef without the drawback of florinef that you mention, would it make sense to go back on florinef?
  9. Ask your doctor but if you are eating things with fiber - vegetables or porridge -- that could be making things worse for you.
  10. I am sure there are whole forums related to the topic of reflux, so it might also be helpful to do some research on the specific topic. Glad you are revisiting with doctor. There are tons of treatments and sometimes if oe med doesn't work anymore it's time to switch it up. I have had severe acid reflux at times and have been on meds for it on and off for years. And I think what Pistol describes is the same for me - I either am too slow/backed up or too fast at different times. What has helped me the most has been identifying foods that work for me. There is a list of foods that is recommended for reflux. I can eat simple carbs and they help absorb the acid - rice, white bread, potatoes. Not really considered healthy any more but they work for me. Plain chicken also works. Jello. Foods which are complex, heavy, fatty, fiber rich, dairy make things worse for me, so I avoid them or spread out the times that I eat them. Smaller amounts are better.
  11. I guess my question is would MCAS cause seasonal rashes? I don't know too much about it, but thought it was something that was year round.
  12. Are your symptoms only occurring at certain times in the year?
  13. I agree with this but would take it one step further. On websites like WebMd they have a symptom checker where you enter in your info. They can guess what you have from a combo of symptoms. It may or may not be in the right direction but it gets you thinking. I would also read about the particular steroid she was given, the side effects from stopping it and from stopping steroids generally. The best thing that patients can do for themselves is to be extremely informed and take of their own health and not wait for doctors to. Your friend is very lucky to have you. You can assist her, but ideally she or someone in her immediate family could do this. I am saying this only because a friend tried to help me when I was first sick and totally guided me in the wrong direction - not on purpose, but because she didn't quite understand what was happening to me. At the same time my parents were looking into it, and they figured it out fairly quickly because they experienced with me first hand.
  14. From tracking my symptoms I know my own headaches are related to low blood pressure - when I drink a big cup of soup and a lot of water I feel much better. At other times I have had headaches from high blood pressure due the medication I was taking, which I had to discontinue. I am so attuned to these headaches now that I know what the cause is and how to treat it. The low blood pressure headache is more of a dull pain than the throbbing pain I get at certain times in the month. I would check with your doctor for a recommendation. Your headaches might not have to do with POTS at all - and the dr can best help figure it out.
  15. get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia.
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