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yogini

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About yogini

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  1. Ive had severe swaying back and forth as my worst symptom. I remember how very hard that was and I really feel for you. I felt like the ground was moving up and down underneath me, but I could still walk slowly and straight. I never fell over (or felt like I would fall) or leaned to one side. To be safe it might make sense to get tested some other conditions that affect balance, like inner ear conditions. Some on this forum have the misfortune of having both inner ear and dysautonomia - maybe there is a treatment outside of dysautonomia which would help you.
  2. Ihad severe POTS following a virus and now I am better and don't take any medicines. But when I get my period or I am stressed out at work I still get POTS symptoms,. Stress and lack of sleep make things much worse. But certainly what you are experiencing could be from your allergies and not dysautonomia. Did you ask your doctor what he or she thinks?
  3. There are only a handful of doctors in the US who are experts in dysautonomia. Many of us wind up working with our local doctors - who know a little or nothing at all - and reading literature to figure out which treatments to try.
  4. There is an organization called Dysautonomia International - maybe you'd be able to find a physician on their list. If you can't find a specialist in your area I'd try to see an electrophysiologist (cardiologist specializing in heart rhythm). They would generally know how to treat sinus tachycardia. If you can find a good one and get them literature about dysautonomia they might be able to help. I live in New York City. That is the approach I took since there isn't a good specialist here either.
  5. When you walk your legs pump blood through your body so that may help relieve some of the burden on your heart. Your experience is not unusual.
  6. I couldn't agree more. Gatorade is junk with corn syrup and artificial colors and it doesn't even contain enough salt to meet the recommended daily salt intake. Broth has been a lifesaver for me. There are tests you can havefor lactose intolerance, food allergies, gastroparesis. But I also think eating increases symptoms in many dysautnomia patients. Most of us just eat and live with the increased symptoms. We all tweak a few things here and there - some remove gluten and lactose, some are vegetarian, some eat smaller meals more frequently. But a large unusual adjustment - like removing a lot of foods from your diet and risking not getting enough nutrition - is probably best done under a doctor's supervision.
  7. You're right. The criteria for POTS is an increase of 30 bpm which it looks like you had. There are many doctors out there who know just enough about dysautonomia to be dangerous. Having had some terrible doctors the best thing you can do is cut your losses and move on to the next one. A person who half understands POTS and screwed up the diagnosis will probably screw up your treatment too. You were smart to get a copy of your test, which you can use with other doctors.
  8. I would talk to your doctor about your target HR range. It depends on height, weight, age, gender and a number of other factors. Some people here have been authorized to keep gong at very high rates. For most people 140 would probably not be considered dangerous. You can also take steps to help lower your HR. For example if your BP is going down (and your HR is too fast to compensate) you could try wearing compression hose when you exercise. When trying to recover from dysautonomia It becomes a tricky balance of pushing yourself without going too far . If you feel very sick after you might be going to far. If you have only mild symptoms after , you might be able to try to push yourself a little harder.
  9. Seems from your post you may have previously lost the ability to speak for about 10 minutes. If so this is just a prolonged version of what you were already having. This isn't a typical POTS symptom, so I would definitely check with your doctor. You could also try to measure your HR and blood pressure while this is happening, and maybe that would help you figure out whether it is related to POTS. Also have you figured out what causes the tremors when you exercise? I switched to yoga and I tolerate that much better than when I used to do cardio - there isn't much of an after effect for me - and it definitely led to a more rapid improvement in my POTS.
  10. 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.
  11. 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.
  12. 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.
  13. The original one is on sale at a few places on Black Friday. Still expensive but makes me feel better about splurging. 😁
  14. 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.
  15. 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.
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