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About Alma

  • Birthday 04/10/1975

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  1. I am using my grandmother's old walker. It doesn't help that much most of the time, really, because I'm still upright when I use it. It does give me a place to sit down if I need to, though, which is useful when waiting in lineups.
  2. I get tingling and numbness in my pinky & ring fingers, sometimes extending up the side of my arm up to the elbow. It happens when I stand up too long.
  3. I have wondered about this, too. Statistically, most people with POTS are under 50. There is no cure for POTS, so what happens to them? POTS does not kill us directly, but it stands to reason that they must be more susceptible to seemingly unrelated causes of death. Yikes. Let's stay as healthy as we can!
  4. I had a really hard time standing today, but my hr is no worse than usual (around 135 standing, 90 sitting, 68 lying down). So I took my blood pressure lying down (84 over 53) and then standing (96 over 82). The standing numbers are actually more normal, so why do I feel so bad? Can it be because there is not enough difference between the diastolic and systolic numbers? I have heard of high and low blood pressure, but is there any such thing as blood pressure with numbers too close together? I have noticed before that on my worst days, the numbers seem to be closer than about 15 or 20 units together, but not necessarily too low. For example, sometimes I am 80 over 50, but I feel better at that than I do at 80 over 60. Does that make sense? I don't want to bring it up to my dr if he's just going to brush it off. I like to be selective in what I say, so that he takes me seriously.
  5. I have hippus, too. Pupillary athetosis. I wonder if it causes my vertigo.
  6. I have a problem with burping when I am pregnant... It is my first sign of pregnancy, lasts the whole time, and magically disappears as soon as the baby is born. After 5 babies, we know when I am pregnant just becAuse I start to burp! Obviously, I am not suggesting that you are pregnant, Mike, but thought I would share just because it seems to provide some evidence for a possible hormonal link.
  7. Thanks for this info! I will post when I get the results.
  8. Thanks, ANCY. Is that a pots thing, not breathing deeply enough? Breathing must be regulated by autonomic system, right? I'm new to this.
  9. I went for arterial blood gas today. Has anyone else had one, and did it show up anything unusual?
  10. Thanks, ks42 and corina, i do appreciate your input. I will look into it on YouTube, and stay away from blogvertisements. Right now, I am trying water, salt and compression socks, but the only 'cure' I have found is lying down. It works every time!
  11. Has anyone tried this? I found what I thought was a blog (wheelchairtorollerblades) about it, but there are only 3 or 4 posts, and I think it may just be an advertisement for this "DNRS." Has anyone heard of or tried this?
  12. I get funny readings with oxygen sometimes, too. Sometimes it tanks when my symptoms are bad, sometimes not. And then sometimes it tanks and I feel fine. I know that I REALLY like when they give me oxygen. It clears up my vision and everything....let us know how your oxygen does overnight.
  13. Thanks, Stellaluna, it sounds like we have a lot in common! It sounds crazy, but I think I preferred it when I thought I needed open heart surgery to this we-can't do-anything-for you and dismissive attitudes from doctors! I am in a situation where my cardio sent me for heart surgery, and when I got there, they said, 'you're fine, go home,' I just want this fixed, but it seems like that may not ever happen, the more and more I read. Glad to know I'm not alone in this, anyway.
  14. I have gone numb before, in both hands. I couldn't drive for a while because I couldn't feel the steering wheel. It was during my first pregnancy, was on and off throughout the second trimester. I don't think it was migraines, though. I get those visual ones from time to time, much like Bigtrouble's description.
  15. Thanks so much! Hello to everyone. This seems like a very welcoming, and a very informative forum. I'm glad to have found it.
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