Faye Posted December 30, 2015 Report Share Posted December 30, 2015 It may seem strange to some, but having an officially name, helps in a weird way. I didn't pass out, didn't think I would, but my heart rate, blood pressure (which got to a point they couldn't grab it) legs wobbling, short breath, palpitations, blurry vision, brain fog....all there....I was so happy to be having a POTSie day...the only strange thing today,Mimi's high pressure for me (120/85)... But then of coarse started bottoming out with tilt...Dr said classic POTs, we don't know why....but suspect have had it since child hood, but two GI infection may have spun me into this flare....so will start with a new beta blocker....and just keep monitoring for now...if blood pressure starts to go down again them we will add the Midodrine....I think I have been doing the high sodium diet and although it raised my pressure didn't really help with the heart rate...I have a very nasty headache....but had to thank all of you for encouraging me to stick with beta blocker free and do the TTT. Even knowing what to ask for....this site and everyone's willingness to put themselves out there to be real and honest is such a breath of fresh air... Quote Link to comment Share on other sites More sharing options...
Becia Posted December 31, 2015 Report Share Posted December 31, 2015 When I was diagnosed with POTS, and then later with EDS, a friend popped her head into the media booth I was hiding in at church (because I couldn't tolerate the sound and lights of the youth room during Sunday school), and said "you have a name for everything that's coming against you. No longer can doctors sit back and tell you you're crazy, nor can you sit back and wonder if your mind is truly the reason for all of this... It has a name, and that makes it real. Now that you have a name for it, and your doctors have named it, now we can go about trying to figure out how to live with it."Having my EDS confirmed, totally made everything I ever felt and experienced, valid. No longer can people tell me it's impossible to live at a pain level of 8 all the time, because with EDS, we experience pain in a way non-eDSers do. Everything my mom used to tell me that was normal, well to her they were. She too experienced everything I'm enduring,Having my POTS diagnosed within 10 seconds of starting my TTT, confirmed that what my body is doing, is real. And right now it's guiding my doctors in learning to deal with me, as I've been one of the more interesting cases for my doctors.This board rocks. I need to pop in more often, but they are great here. Quote Link to comment Share on other sites More sharing options...
Faye Posted December 31, 2015 Author Report Share Posted December 31, 2015 Bercia ,beautifully said, captured it as tho you were looking in my world of thoughts, feelings, and experience of days of recent. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 31, 2015 Report Share Posted December 31, 2015 Faye I relate to the relief of finally having a diagnosis even if it is not really a great one ! I found this forum a great comfort when I really confused about what was going on with me, I hope you are feeling better soon Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 31, 2015 Report Share Posted December 31, 2015 Congratulations! I totally understand! I was over the moon when I actually received my POTS diagnosis. I wasn't happy I was sick. I was ecstatic that a doctor had believed me, sent me for the appropriate tests, and that we finally had something to call what I was experiencing. So glad you now have a name to put to it and that will make getting treatment easier! Quote Link to comment Share on other sites More sharing options...
Faye Posted December 31, 2015 Author Report Share Posted December 31, 2015 For now I think once we get my tacky in a better place then, maybe get GI dr and cardiologist power talking in a few plans to keep IBS spasms at bay and HR/BP for more frequent better days....of the two behaving! Then maybe do something about the restless legs I get at night....I have yet had a day where the two were dormant... A lofty goal, and I am sure I will post those days I am frustrated beyond belief...But for now at least it is nice to have a dr who believes that what I am facing, that it is real, and going to work to find what works. I'm still,not sure if I found the cardiologist for me, but out of the 4, he is the one who asked questions that told me he has a clue about it, and ways to help treat it, and suggesting some othe test to confirm any other possible causes for POTS...in the mean time working on HR/ BP. Quote Link to comment Share on other sites More sharing options...
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