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Everything posted by yogini

  1. As an update, I noticed this article in my local paper about the accuracy of the Fitbit, based on a recent study by the Cleveland clinic: http://www.nydailynews.com/life-style/fitbit-piece-junk-article-1.3048298?utm_content=buffer27789&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer https://www.sciencedaily.com/releases/2017/03/170308145327.html
  2. I've heard the collagen in bone marrow is healing, but I think you would get more of his from eating meat or the marrow itself. I think it's the hydration and the fact that it's very easy to digest that makes it helpful to many conditions.
  3. And by the way, I agree with corina. Generally with POTS it would be both pupils dilated.
  4. You can definitely still have symptoms when your HR and BP are normal. However, I wonder if your BP was low at the time you experienced these symptoms.
  5. What was your total salt intake before and after the diet change? Your new diet could be very low in salt, even with the Pedialyte and coconut water.
  6. Thanks! I actually make homemade chicken soup which I guess is the same concept.
  7. I am in terested in trying bone broth. There are whole restaurants dedicated to it here in NY. But is very expensive. Do you have a good recipe?
  8. You can look at the DINET physician list on the main page. If you have dysautonomia, you would have an abnormal increase in heart rate or an abnormal decrease in blood pressure when standing, not just during your episodes. It might save time if you figure this out at home out before contacting a doctor.
  9. Have you been diagnosed with dysautonomia? If you want to measure your HR and BP, you can count your pulse and buy a cheap blood pressure cuff.
  10. I have been drinking a lot of tea (peppermint or ginger) lately. It has helped my stomach. I think I am getting more fluids from drinking this, which is an added plus. i drink organic broth to stay hydrated during stressful periods i take melatonin for sleep.
  11. It might be helpful to search other posts as this topic comes up a lot. It sounds like you are preparing correctly. Most people - even those with very severe dysautonomia, wheelchair bound, etc. - do OK when they prepare. I have not heard of too many (if any) emergencies during travel. But if you are worried, maybe it is better to wait until another time when you are more comfortable. Stress will not help.
  12. If you didn't have the symptom before you started florinef, or don't remember, I would ask your dr. Florinef has a lot of side effects.
  13. I think there good info both on DINET and on the forum about the best exercises for dysautonomia. Most people do seated or reclining exercises.
  14. Dysautonomia causes many of us to have trouble keeping up our blood pressure during exercise. Stairs are challenging for us. Did your doctor give you these particular exercises for POTS?
  15. My mandoline slicer slices so thick (or slices my finger)...lol!!!
  16. Have you been tested for low blood volume? You can have low BV without low BP. I think any of us here would really be guessing and we are most familiar with bradycardia incidental to NCS or POTS. Sometimes it takes time to find the right dr for these types of issues. I'd encourage you to keep looking
  17. Have you had a heart workup from your cardio - ECG, EKG, stress test, etc? This should generally pick up anything that is wrong with your heart that would cause you to faint, etc. Palpitations are pretty common and they are scary, but they are usually not dangerous for POTS patients. I would get the workup as a starting point, which you should be able to do without mentioning your concern about driving.
  18. I am always freezing cold. I think I stop shivering at 70! 75/80 feels comfortable. When it gets into the 90s I sometimes feel sick.
  19. A mandolin slicer makes chopping easier. I roast things in the oven with olive oil, salt, pepper. Add spices if you want (like thyme, rosemary, dill etc) : salmon, chicken, asparagus, potatoes, brussels sprouts, cauliflower. Super easy, healthy and quick.
  20. I think the recommended amount of salt for dysautonomia is 5g per day. Most of us who take salt have low BP, although some people with hyper POTS (high HR, high BP) take it too. It may make sense to coordinate with your doctor on this.
  21. Do you have low blood pressure or just bradycardia? If you have low (or normal) BP and low HR, have you tried caffeine?
  22. An MRI is pretty expensive test - mine required special insurance approval - so a dr probably wouldn't order it unless there was a specific concern based upon your symptoms. Is there a particular condition that you are worried about that an MRI could diagnose?
  23. You are right, it should be from lying to standing.
  24. A normal resting HR is considered to be 60-100. The more active you are, from standing, to walking to taking the stairs, the more your HR will go up. I think most of my friends and family would have a lower resting and active HR than mine. Mine is say 70-90 while sitting, 100-110 while standing, 110-120 while walking. I also have an abnormal response to motion - so if I roll over in bed, for example, my HR increases a lot. I think I have IST (inappropriate sinus tachycardia) in addition to POTS. But my doctors do not consider these numbers dangerous. The target and maximum heart rates ar
  25. I think being overweight could affect BP or HR in either direction. It's also normal for heart rate to constantly be fluctuating. It does not stay a flat number. I would compare your average sitting HR to your average standing HR. Sit for 10 mins. If the average sitting rate is about 30 bpm less than the average standing rate after you stand for 10 mins, it indicates POTS. You are right that your legs turning purple isn't normal.
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