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About StandUpSitDown

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  1. Hi - I have moderate anhidrosis with my AAG. When it comes my turn, I plan to get a covid vaccine - but I admit to being worried about the second shot - where some get fevers. I haven’t had an illness with a fever in years. What happens when you get a bug and get a fever, but have some trouble sweating? I am suddenly rather nervous about this, and I don’t know if I even should be nervous. I know I can talk to my doctor but I was wondering if any in the group had a thought. thanks!
  2. I've been diagnosed with POTS since 2005, which was better diagnosed as AAG in 2011. I am lucky. I have an extremely supportive wife, a job that I can do leaningback with feet up, etc. I have learned to live with the difficulties just like most of you. Yesterday, my wife drove us an hour to a planetarium show. My symptoms decided to flare up just as we got there. As I said, I have an amazing wife. But I don't think I've been this blue about my condition in years. Amazing how I can work through day after day of limitations, and it's something absolutely trivial that gets me
  3. So the past four years (but last year), my wife and I have visited Disneyland once a year as sort of a break from everything. It's a 6 hour drive from our house, she does the driving. I rent a scooter when there, and the past three times it's been wonderful. I go about on the scooter, from place to place in the two parks here. In the summer of 2011, I even took it down the street to the Anaheim convention center (almost a mile from our hotel), to go to see a day of a Disney fan conference there. I loved how the scooter made me feel so very mobile. It was GREAT. This time the scooter is making
  4. Let me turn the tables a bit, as a guy with POTS. If your husband were as sick as you are - think deeply about this for a bit - how do you think you'd be dealing with it? If he were unable to work; if he needed help with so much. Imagine if you were a guy - and you talk about the lack of sex drive. Imagine being that tired, nauseated and dizzy, and being a guy. I am lucky. I work in a field (computer programming) where I can work from home most days, and do so with my feet up, so I earn an income without much physical exertion at all. Again, I am very lucky. My wife is wonderfully supportive.
  5. One thing I want to clear up, as I didn't check this thread after I made my post a few weeks ago. The Zio Patch from iRythm *does* record every heart beat. The report it gives also shows 'detected event's from their computer analysis of the recording. But it will also pay special attention to the times you push that EVENT button. But it is indeed a RHYTHM monitor - it shows when beats occur - it doesn't show anything more than that, and it cannot produce the kind of charts a multi-lead holter can.
  6. Tinks - this is entirely a guess: Perhaps the counting backward in increments of 7 is asking you to do something that's not easy, and requires mental concentration. If you are in a fog, or distracted by symptoms, that otherwise aren't significant enough to show up on their monitors, perhaps doing this helps show them stuff. Again, I don't know. If someone is 'good at these kind of numbers games' it may be that they can do this easily no matter what, even if stressed by POTS, whereas someone who has struggled with such number work in their head may find the slightest thing - the test environmen
  7. One suggestion: see if you can find a doctor who is willing to order this test from Mayo Clinic. It's probably not cheap. http://www.mayomedicallaboratories.com/test-catalog/Overview/89904
  8. I'd actually ask WHY the monitor is being used. In my case, I recently was given a 2-week monitor that still allowed me to take quick showers, and was invisible to everyone but my wife (well, for a guy that's easy as we wear full shirts vs. women who wear lots of clothes that expose their upper chests.) It's a size of a large band-aid, and it was called the "zio patch" from iRhythm. The reason I liked the two weeks duration is that it was only on day *5* that the issue that I felt rarely came up, so I was able to push the event button, and record THAT'S IT - and was relieved to find out it was
  9. I've had autonomic issues (purely POTS - so far) since 2005; I am 51. During that time, I have been able to continue working, although during flare-ups, (such as May-September were for me), I have had to get help from my wife driving me pretty much everywhere. I am blessed in that as a software engineer, I can do almost all my work while sitting with a laptop laying in bed, or sitting up in a chair with a hassock, or talking on the phone or video-conferencing with people from work. As a result, even on the worst days I can continue working, I have been able to fulfill a 'provider role' in my m
  10. For me, I am in the VERY ANNOYED phase right now. For six 1/2 years, from 2005 until 2012 (early), I was slowly regaining capability. I was driving my wife 100+ miles in the car, going out to dinners, enjoying a movie. It was a 'quiet' life compared to life-before-POTS, but it had fun in it and looked to be slowly improving. Then, I did too much May of this year (flew to a relative's wedding, outside in 95 degree heat for hours - did great, but the next morning I paid for it with a huge POTS crash into a big setback, so it's like 2007 again. I hope it doesn't take *four years* to get to where
  11. In reference to the person who mentioned you have to "up" the dosage of Propranolol every six months: It's important to remember that POTS has so many root causes, most of which we understand so poorly, that it is impossible to make any general statement about its treatment. For example, I have been on Propranolol since early 2007 - for the first 3 months, it was 20mg a day, now it is 40, and I have remained on that dosage for over two years, with no lessening of effectiveness. I have good days and bad days, but overall, on my typical day, I feel somewhat better after two years on the drug - n
  12. Actually - yes. My wife and I are both somewhat fascinated by this so - yeah, a couple of times I started with the blood pressure cuff attached to my arm and then, in the midst of things, my wife would press the button on the BP monitor, and *freeze* - I'd be very still and let it get checked. And I have a heart monitor strap that I can wear around my chest, and my laptop computer will take continual heart readings from it. We've monitored them throughout and it is as if I feel a shudder - that I hadn't felt before POTS - and then my heart rate goes a huge step down after that shudder. And it
  13. If relaxation could reduce my heart rate and keep it from rising when standing, I would be first in line to purchase the biofeedback tapes at the bookstore. Unfortunately, for many of us here, the disease causes the anxiety, not the other way around. And I've yet to find a way to, through mental control, to lower the delta between supine and standing heart rate. And I am pretty good at the mind over body stuff. I can pretty much block out pain, relax my way out of headaches, etc. There's something in the bloodstream post-orgasm which is making me feel better, and I want to know what it is.
  14. This is an extremely interesting set of responses. And like I said we are all adults, we know where babies come from, and this is a physical activity that puts unique stresses on the system - and it isn't "just like exercise" - unless exercise arouses you. So.... there is something to learn here, that perhaps we need to let doctors get clued in over - because NOBODY is going to get funding for a study of this... At least there is one other person "like me" - which is good to show that there is SOMETHING to what I believe. For all we know, we may be discovering a very SIMPLE way to distingui
  15. Okay - lots of us are adults here, so I want to ask an adult question. I am a male, in my 40s, diagnosed with POTS (but no loss of blood pressure standing) - just higher heart rate. And - after sex - and the attending event during it - for about 30 minutes afterward - it's as if my POTS doesn't exist. My heartrate doesn't go up much at all - maybe 2 or 3 BPM. After 30-45 minutes - I'm back to me. Heartrate up about 15-20BPM. it's to the point that I can predict it, and will actually get up and do stuff around the house because I don't feel as badly as I do normally. Does anyone else experien
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