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eaudire

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  1. Just popping in after a few months because this really resonated with me. For me, too, life is increasingly seeming like an exercise in just pushing through, made bearable by the possibility that one day I won't feel this way on a regular basis. Self-deception isn't exactly bad if it's another tool in your box, I guess. I'm glad a couple of people have found some relief with Mestinon. I'm going to bring it up with my doctor at my next appointment. Willingness to try medications has become my number one criterion for doctors, as I'm also essentially undiagnosed at this point.
  2. Hi all, Just wanted to provide another update and ask for some feedback. I finally had my Tilt Table last week and am still awaiting the written report, but was essentially told at the hospital that the test assesses the patient's tendency toward vasovagal syncope, and that, since I did not exhibit any of the related symptoms, my test was "negative." However, the nurse practitioner overseeing the test did mention that my heart rate increased from 72 bpm to 137 bpm when the table was elevated to 80 degrees and that it kept fluctuating widely throughout the test. She seemed to think th
  3. I'm curious about the connection between craniocervical instability and POTS in relation to my own symptoms, and wondered if those with the condition could answer a few questions. 1. What are your most prominent symptoms and which did you notice first? (i.e., did you start having terrible head and neck aches, or did you notice heartbeat irregularities first?) 2. Which tests confirmed the diagnosis? (i.e., an MRI/X-rays/other imaging, and were they done supine or upright? Did they include both the brain and spine?) 3. Did they determine the cause of the instability? Many t
  4. Hi ladies, Thanks so much for responding - I did read that the majority of POTS sufferers don't actually faint. I've certainly experienced the postural heart rate increase without even really feeling faint. I should probably clarify that I'm not hesitant to do the TTT because I'm frightened of how I'd react, but because I guess I'm not sure how helpful a positive diagnosis would be in what seems to be a relatively mild case like mine, especially when I've already done the poor man's version (which was confirmed at the ER). I say "mild" because, if I didn't have to do a mentally taxin
  5. Hi DizzyGirls, Thanks for your replies. I've done a poor man's TTT and it confirmed my suspicions, so this is indeed one of the reasons why I'm not really sure why it's necessary to have the actual test done. A few questions for you: 1) Why do you say the test was barbaric and what exactly did it involve? (I've never fainted from POTS and don't have pain or gastro issues, so I guess I never imagined that I would have a terrible reaction to it, but maybe I'm wrong.) 2) Were the results of the test meaningful in any way? Did they eventually help to pinpoint a cause or suggest a co
  6. I've been reading this forum for many months now and have only just decided to post. I just wanted to say I admire you all so much for your fortitude and bravery in dealing with such a difficult condition. I know we're not all dealing with exactly the same symptoms or underlying conditions, but the fact that most of us have struggled to describe our symptoms accurately and have had successive inconclusive lab tests suggests to me that this might be a good place to seek opinions on my condition and guidance for next steps. At the outset, I just wanted to say that I haven't been diagnosed w
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