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yogini

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Everything posted by yogini

  1. Being below sea level might actually be beneficial for POTS, but I would also be worried about the change in barometric pressure from going under and then coming back up again. You may want to search the forum. I am not sure if there are other discussions on SCUBA, but there are a lot on flying. Some people have trouble and pass out during ascent and descent due to the pressure change. Underwater it would also be hard to communicate and signal for help if an issue comes up. Because of this, I am very surprised that a doctor didn't caution more strongly, but it is really individual. You als
  2. Yes, eating makes things much worse for me. Even now I am "well" and have to be careful about eating large meals. Try eating small meals with low carbs and doing some searches on the forum to see what eating habits have worked for others. It is a lot of time and trial and error, with medications, foods, and finding the right doctor. This condition can best be treated by those that have lots of experience and there are only a handful of them in the country. Most of the doctors out there have no idea how to help us and make things worse - emotionally and physcially. We need a of patience an
  3. While many people that have POTS have co-conditions like mast cell which cause rashes, I do not think that a rash is a "typical" symptom of POTS. It's good that you are talking to your dr to figure it out.
  4. People post a lot of "rules" about what you can and can't do with POTS. In general, I think you need to evaluate activities based on your own particular condition, with advice from your doctor. I can handle many things that aren't recommended, like riding roller coasters and drinking alcohol. It is always scarier to try a new activity when on vacation - I worry about getting medical attention, inconveniencing the people I'm traveling and making it back home. I love the water and grew up swimming. Water sports seem fun to me. I've had good luck snorkeling for the most part, although I was o
  5. There are many people who have dysautonomia and don't have POTS. On this forum, most people who don't have POTS would have OH or NCS. Do you have either one of these?
  6. It could be many things - from lying in a certain position, to the type of massage, the firmness of the pressure, or touching particularly sensitive areas of your body. For example, they could be pressing something in your neck that triggers POTS. POTS patients can be very sensitive. Luckily for me, massages make my symptoms better. I do have to give some instructions - I tell them to stay away from my stomach, chest and spine
  7. Get a BP monitor at home and start taking your BP a few times a day, sitting and standing. Keep a log. You will get a good sense of whether you have OH, and it will be helpful to show your doctor. Betas lower your BP so can sometimes be hard for OH.
  8. Do you have a positive tilt table test? if you have not had one, many of the drs in NYC will do for you. It sounds like your diagnosis is not clear, so I would focus first on getting a diagnosis before finding the right doctor. It takes a lot of time to find the right doctor, and you might not want to spend the time unless you are fairly certain you have dysautonomia. The detailed dysautonomia testing also may not make sense if you don't have a diagnosis. It is not always helpful (I had it and found that trying different treatments was more helpful than the testing). Positive thinking ne
  9. You may want to do some searches on the forum. I think there was some recent research by Dr. Grubb that shows that most POTS women have healthy kids. Did your doctor say it is safe to take florinef during pregnancy?
  10. 4 months is not so long. I spent 3 months in inner ear rehab for no reason, also trying to explain my symptoms. Other people here have had the wrong diagnosis for years. Are you feeling better now? Is your condition curable?
  11. Have you been diagnosed with dysautonomia? You may have that plus another condition causing your other symptoms
  12. have you tried compression hose? they should help swelling of feet/legs
  13. These do not sound like common symptoms for dysautonomia. Ask your doctor if you are concerned
  14. IT is hard to tell what the problem is - it could be the wrong beta, the wrong dosage, time of day you are taking or betas could just be wrong for you. Sometimes you need to combine betas with a BP increasing med like florinef. When you say HR spikes what do you mean -- how much?
  15. I am not a doctor, the numbers you are reporting do not seem severe to me. I have had 100 pulse lying down many,many times - or even higher like 120. A BP of 100/49 lying down is not abnormal. I have had Bps of 60/40 and this is within the healthy range for lying down - even for people without dysautonomia. I still get these numbers sometimes, but I am able to work full time and have close to a "normal life" Personally, having these numbers would not make me stay in bed. You should ask your dr whether this is required - bed rest usually is not recommended for POTS patients. Staying in be
  16. I do not think toprol would make you gradually worse over time, unless you increased your dose over time. IF you have tachycardia and low blood pressure, sometime it helps to take a med which increases your BP (like florinef or midodrine) along with the beta blocker. Or maybe it's not the right medication for you at all. I hope the new doctor helps you find a better treatment for you.
  17. i don't know much about depression, but believe that beta blockers can contribute to depression.
  18. Did you start taking it before POTS for another condition? I think it's very unlikely that a beta blocker would cause POTS or autonomic issues. It leaves your system within 24 hrs and you should be back to "normal" if your dr tells you to taper off of it. Beta blockers aren't for everyone with dysautonomia. They tend to cause low blood pressure - which for those of us with already low blood pressure sometimes doesn't work. On the other hand, they help lots of people with POTS control their heart rate and are one of the most common/effective medications we have. Each person is different.
  19. POTS is a form of dysautonomia, the most common form.
  20. Goschi Not sure your "study" is scientifically meaningful for a number of reasons. But most of all I agree with Katy's question. Unless their HR went up 30 bpm very quickly and stayed there (or continued to increase), I don't think they have POTS. I am pretty sure most healthy people wouldn't have this increase. My friends have standing HRs in the 70s/80s (def less than 100), so they clearly don't have the 30 bpm increase. With POTS, mine is in the 120s/130s if I'm lucky.
  21. That's awesome. I would be optimistic that they would be able to help you.
  22. It si very common. Mine has improved a lot through yoga. Getting a massage also helps.
  23. The stress test is really done to measure your heart health and not really for the postural effects of POTS. most of us have a healthy heart even though we have dysautonomia.
  24. Can you build in stages, like trying a day trip first? Is there someone that can travel with you?
  25. I am optimistic. i've had POTS over 10 years and it seems like patients are banding together more than ever to raise awareness. The discussions on forums like these seem to be a lot more in-depth and scientific than they used to be. Hopefully as the world learns more about POTS, it will become easier to diagnose and treat.
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