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Everything posted by yogini

  1. I think for many people with POTS, our blood pressure is lower than normal and it Is responsive to salt - so the sentence you quoted doesn't apply. Arterial damage and strokes are caused if you have high BP over a long period of time. If you are just brining your BP up from low to normal through salt, there should not be a risk. I have been assured by my doctor that high salt intake is appropriate for me. Many doctors not only prescribe salt for POTS patients, but florinef, which makes us retain even more sodium to drive up our blood pressure. Unless there was a study saying extra salt is b
  2. I dunno - salt helps me a LOT and my doctor told me not to worry about the salt warnings for me. And I definitely don't have autoimmune issues or inflammation. We are all so different - it's best for each person to decide after talking to their doctor.
  3. Yes, this was a very big issue for me. In my case, when I started monitoring my heart rate during exercise, I found that it was going too high and not calming down enough after. Then I would have bouts of tachycardia and have to stay in bed. I also got migraines for days after exercising. A few things helped me with this - first warming up and cooling down to ease into exercise. I also started wearing compression hose when riding the bike - this kept my HR down. And then finally I realized that cardio wasn't really for me - I switched to yoga, which is much gentler for my body and he
  4. Yes, I agree with Sylvie. Generally it is safe to eat foods that are naturally high in potassium, like bananas + mushrooms. But I wouldn't take a pill or use a powder to supplement potassium without speaking with your doctor.
  5. My favorite broth is called Better than Boullion brand. It's a paste which you can get in Whole Foods -- I sometimes see it in regular grocery stores too. I get the organic chicken one. Whole foods also sells broth cubes which are very high in sodium and organic. I think it's 750mg per serving, so extremely high in sodium. I try to stay away from canned broths and soups which have MSG.
  6. There is a different between sodium and salt. There are about 400 mg of sodium in 1 gram of salt - and food content usually labels sodium, not salt, So make sure you are using the right measurement. Rather than measuring tablespoons of salt, I find it easier to eat food that is naturally high in salt. These are very easy to find - you can research online. I drink organic broth - that is one way to get all my salt content for the day.
  7. It's very common to experience other symptoms of POTS when your heart rate and BP are normal.
  8. Chest pains and irregular heartbeats are very common, especially in dysautonomia but also even with healthy people. They are scary but they aren't dangerous UNLESS your cardiologist tell you that they are. It sounds like your doctors ran tests and concluded you don't need medication. This does not seem unreasonable or unusual for a POTS patient.
  9. Thank you. I have been thinking about it. Your post convnced me to try it!
  10. This is very great advice. I too am much better/functional. For most of us that have improved, it takes a lot of trial and error, hard work and patience. I remember many people over the years - some extremely sick for years. Many who were sure they'd never get better did.
  11. Yes, curious to know -- what is an "adrenaline crash"?
  12. Sorry to hear your challenges. It is frustrating even with basic POTS, so I can't imagine. I don't know anything about gastro issues - I think there is a separate forum. Maybe that would be a good resource for you.
  13. Supine hypotension is a concern even when taking a nap or even when lying down awake, but you should be able to manage it by timing doses. Also, for many POTS patients the BP is low enough, that even with midodrine you do not have hypotension. This is why I have sometimes slept with midodrine in my system or compression hose on -- and have seen others post about this. But it's very individual - so pls check with your dr.
  14. If you are transition ion from a pediatric doctor that you like, you may want to start by asking that person for a recommendation. The Dr situation in NYC is not great. I tried a bunch of different specialists and had good luck with Richard Mueller. He's a cardiologist, not a POTS specialist but is familiar with POTS and was willing to listen to my suggestions.
  15. I think with a lot of these medications you have to try them for weeks or months to see if they work. Also, one medication might not work by itself, but might work in combo with another med. For example, beta blockers and florinef sometimes work together. If one beta blocker doesn't work, another might. It is really personal so you have to work through it with your doctor. If you don't have a good doctor, maybe someone in your area can help you find one. I don't know about gastroparesis but a lot of people have experience - so you may want to post separately and also search through old PO
  16. If you are eating in the morning, maybe you are eating too much? I have a hard time with eating in the am. I eat more later in the day. At my worst I couldn't get up in the morning, so I feel your pain.
  17. The best thing to is ask your dr and/or pharmacist, My understanding is that you can skip or delay the dose of midodrine in order to take a nap. Skipping a dose shouldn't reduce the effectiveness of midodrine - I assume she isn't taking it at night anyway, and this should be no different,, Though not ideal, I think a lot of us also wind up taking naps with compression hose on or midodrine in our systems.
  18. If your daughter has been diagnosed with vertigo,has potential mast cell and is taking medications, it could be one of several causes. It could be POTS, it could be something else. I've had POTS related spasms and mine don't sound like what you are describing.
  19. It takes a few weeks to adjust when you first try a beta blocker. I've tried 3 beta blockers - one I couldn't breathe on. It's a very different for each person, so it's best to talk to your dr. Beta blockers statistically have the highest success rate in helping POTS - I've read they work for 50% of the people.
  20. I also had ringing in the ear before POTS. It can be caused by other things - like allergies. But I started getting increased sounds in the ear with POTS - pulsing, ringing, crunchy noises. It can be in one ear for me or both. I went to an ear dr at one point. It probably doesn't hurt to do this to be safe.
  21. Yes, you have to push past the fatigue. It is really hard but if you keep doing it, you will improve. Elevating the head of the bed is a great idea. You can also sit and put your feet up.
  22. The Polar HR monitors with a chest strap are ECG accurate (medically accurate). The Fitbit isn't accurate. There have been lawsuits about this. There are times when my Fitbit is way off from when I measure my pulse. I use it to get a rough sense of my HR. If you think the averages are wrong, you can try to contact their customer service.
  23. Mental illness and stress do not cause POTS. If you do have POTS or dysautonomia it is a physical condition. POTS can affect your ability to deal with stimulation. You may have something overarching which is causing both the POTS and the mental illness. I encourage you to persist and not give up. If you find the right treatment, you could feel a LOT better.
  24. Yes, this is a pretty common symptom of POTS - both ringing in the ears and hearing and/or feeling your pulse.
  25. You should ask your dr but you usually have to supplement florinef with salt to ge the full benefit.
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