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Everything posted by yogini

  1. There are a few ways I have dealt with this. First, my personal (non-medical) opinion is that you don't need to do cardio. And don't be in a rush. The exercise protocols are very harsh - too harsh - for many people. Build up. If you are getting sick, walk, stretch, do lying exercises on the floor. Do seated exercise. Practice standing if you can't stand for long. Build up. If you are on a bike and it is making you sick do 5 minutes or 1 minute. Your body might get adjusted and be able to build up. Experiment a bit. Stretch, warm up, cool down. Ask your doctor if you can wear compression ho
  2. HI, need some more background about your diagnosis, symptoms and doctor's advice. But it isn't unusual to have a rapid onset. And actually people with rapid onset have the best chance for recovery. It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.
  3. Medications have bene invaluable in getting me back on my feet. I wouldn't discourage anyone from taking meds, but it is very important to read the side effects and interactions. POTS it is also important to research the impact of these drugs on POTS patients, since there can be additional side effects. A natural supplement has the same potential for side effects as any medication and needs the same research, plus natural supplements aren't regulated or studied, so you can't be sure what's in them.
  4. IF putting your feet up helps, have you tried compression stockings? They help with pooling
  5. I agree with TrainBoysMom. Usually when there is a change in symptoms, there is a trigger. I wonder if it's a medication and not really a POTS flare up. i would read up on the side effects of the meds you took or are taking and also search the forum to see if other people have had bad reactions.
  6. Hi Finnmin, I would definitely ask your doctor or pharmacist before changing the time of day to take the medicine. You'll get some wonderful advice here on the forum, but always best to consult your doctor before making any changes. I believe they would easily explain any of your husband's concerns. If you take tylenol in the morning or at night - it's the same medicine, it should not be any more or less risky based upon the time of day. Beta blockers are a bit more complicated than tylenol, but it is the same concept. It should not be dangerous just because you rake it at night -
  7. As a woman, it adds a little bit of extra discomfort to more discomfort that we are already wearing
  8. Hi Vicky, I would count your pulse manually rather than rely on the fitbit, since it has been shown to be inacurrrate.
  9. Sometimes you have to try a few different beta blockers to find one that works for you. If he tries a low dose at night, maybe that would work? Also the fatigue wears off once your body gets used to the BB. With high BP I would be reluctant to try salt or compression hose unless your dr approves. Does the exercise make him sick, or does it just not help?
  10. Hi Marcus, I'm sorry you've had such a hard time finding a doctor. I think there are others on this forum from the Netherlands. Maybe it would be helpful for you to connect with them.
  11. Funny! A sandwich here is two pieces of bread plus fillings like meat and cheese, plus mayonnaise, etc. Ask your doctor, but I think it probably would not be healthy for most people to eat so much plain bread in one day. But I have a much easier time digesting foods other than carbohydrates (like bread), so I understand why bread would be a main staple. I think it is probably not POTS itself, but a co-condition which affects your ability to eat - so I hope you are able to get a diagnosis.
  12. Maybe you mean a different word than sandwich? A sandwich (in the US) would at the very least have 300 calories (often much more) and generally lots of fat. 30 sandwiches would put you at 9000 calories per day not including other stuff you eat. I would check with your doctor about your fat intake if it is outside of guidelines. Some people with dysautonomia get sick from eating a lot at once (it lowers your blood pressure) and also have food intolerances or gastric conditions, which might be factoring into to your ability to eat things.
  13. I switched to yoga and that is much better for me. I have done cardio at times, but with yoga I can walk out of a class and immediately do another activity. I don't feel depleted. Though I used to have to sleep after class, when I first started, I never got headaches, etc. like I did with cardio. And my POTS symptoms are minimal now, so it did the trick.
  14. I drink organic broth when I need salt because I couldn't find anything else that works. Hydration drinks don't have much salt and natural foods have virtually none. A higher salt diet has made a noticeable difference for me.
  15. Yes. At first I started by riding a bike for 5 minutes. Do whatever you can do. Even doing stretches on the floor is a good start. That's what I did on my very worst days.
  16. 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
  17. 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.
  18. And by the way, I agree with corina. Generally with POTS it would be both pupils dilated.
  19. 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.
  20. 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.
  21. Thanks! I actually make homemade chicken soup which I guess is the same concept.
  22. 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?
  23. 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.
  24. 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.
  25. 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.
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