POTSMama Posted July 14, 2004 Report Share Posted July 14, 2004 Hi again,Well, I almost don't know how to take this outcome! I called my cardiologist's office today and politely informed them that the people at the hospital (Swedish Hospital in Denver, Colorado) who gave me the TTT yesterday (previous topic) used completely improper procedures based on my research on the test, and reminded them that I am a Ph.D medical researcher and did my "homework" on the test. To his credit, the cardiologist was upset to hear that they had allowed me to move/stretch/talk during the test, had not taken a proper quiescent baseline, had used only 30 minutes upright with no stimulant and then terminated the test even though I was just getting dizzy (the standard is 45 minutes IF no stimulant is given, and 10-30 min if one is given), etc. He agreed the test was poorly done and thought it should be redone. But his solution was to go to a different hospital in Denver (Porter) to have it done with Isuprel (spelling?). The problem is that my medical insurance mandated that I have it done at the first hospital and will charge me a relatively huge out-of-network cost for having it redone again at the other hospital. He says I could also have it redone at the first hospital with Isuprel and it would be covered, but I totally don't trust that place now to know what they're doing and wonder if they're even safe. So I'm going to have to think about whether I want to re-do this testing at all right now.... Especially since I'm starting to wonder if my cardiologist is taking me seriously and if he really knows anything about dysautonomias! After reading the below, would you all give me an opinion as to whether or not you think I should absorb the expense to have the test redone with Isuprel under this cardiologist's evaluation?Now that the TTT is past and I'm going to delay a couple weeks making a decision about a retest, I asked the doc if I could now go back on a much lower dose betablocker to control my symptoms (as we had previously agreed I would after the testing was over) - - For 14 years, betablockers have controlled my symptoms reasonably well but then I started feeling horrible this year which is why I went to this cardiologist in the first place. He found out that my cardiac output was way low, which he said was due to too much betablocker for too long. He told me it takes weeks to wean off of betablockers and get past withdrawal symptoms, so he completely took me off them for the last month, and sure enough my cardiac output measures back up to normal and I feel less tight-chested, less exhausted, and more able to breathe. HOWEVER, I've also felt awful in other ways these last weeks: trouble sleeping due to tachycardia episodes and/or wild blood pressure swings, wild blood pressure swings during the day making me dizzy, my pulse zooms as high as 140 when I so much as walk across the room (with a pulse of 70 when I first wake up in the morning), adrenaline surges wtih loud noises, etc....and I have 2 little ones to care for and a home-based consulting business, so this has been a tough month. I figured it was worth it to make sure that the high dose of betablocker was the issue and get the testing done, and I was relieved that this doctor had directed me to NCS as a possible diagnosis after just being told I had "hyperactive nervous system" or a "hyperactive adrenal gland" for years. Still I am VERY anxious to get back on some low dose, yet today the cardiologist suddenly says he'd "really prefer" I "get off the medicine completely" but to go ahead for a couple weeks and take 1/4 to 1/2 pill until I see him again then. THEN he says he wants me to read a book called "The HeartMath Solution", and that he thinks I should go see a doctor named "Bill Bergman" who does "biofeedback techniques that do wonders to help people control their heartrate". I thought, hmmm, I've never seen this as a treatment option in any of my research on dysautonomia but I thought I should stay openminded. (Has anyone here heard of such a thing?). Then I asked him if he was familiar with POTS, also called Orthostaic Intolerance, and I told him I have been researching this and really feel that POTS matches my symptoms far more than NCS, which is what he has been evaluating me for. And he says "oh yes, I'm familiar with that, but I still think you more likely have NCS". So I pointed out that I've never fainted, and even though my blood pressure sometimes drops out it is not always when I'm standing, and it also goes really high sometimes, and yet I very, very consistently have postural tachycardia (and hyperadrenegic symptoms) when I'm not on betablockers. To which he says "well, read the book and we'll talk more about all this in two weeks when you come to see me".Well, then I looked up the book by the title he gave me ("The HeartMath Solution") ACK! Here's a partial description of the book from Amazon.com:"The HeartMath Solution may easily be written off as a book too eccentric for widespread public consumption, and that's unfortunate. The title's a bit misleading--it's not about cardiac care and it's not about calculus, but rather how 30 years of research have shown that the heart's "intelligence" affects emotions and physical health--especially when it comes to handling stress--and specifically what you can do to balance heart rhythms, reduce stress hormones, and boost your immune system. Yes, it sounds complicated, especially when you read that cardiologists worked with physicists and psychiatrists to develop the HeartMath program. But it's worth brushing off your skepticism and exploring the concepts in the Solution, as many employees of Fortune 500 companies have already done.The "intelligence" that the authors focus on refers to both the heart's "brain," or the 40,000 neurons found in the heart (the same number in the brain itself), and the intuitive signals the heart sends, including feelings of love, happiness, care, and appreciation. When such positive emotions are felt, they not only change patterns of activity in the nervous system; they also reduce the production of the stress hormone cortisol. When there's less cortisol, there's more DHEA, the so-called fountain of youth hormone.....This is a book that takes a bit of scientific understanding and a lot of time to wade through, but one that could help you prevent stress from ruling your existence"So I ordered the book anyway and I will read it, and I DO think that meditation techniques and other calming things have helped me some over the years (I've tried that before), but they do NOT "cure" the problem. So, do you think my doctor is just blowing me off and now saying he thinks that my extreme tachycardia episodes and blood pressure fluctuations are just "stress" (and why would he change his mind unless he really IS believing that rotten TTT "negative" test result), or is it reasonable to believe he's still evaluating me for a physiologic disorder but thinks these kind of meditative approaches may help calm my system even if I do have NCS (or POTS)? Anyone else heard of or read that book? I asked him why he felt it was so important to re-do the TTT since I have all the classic symptoms of POTS (and some possible symptoms of NCS) and they are treated the same way with low-dose betablockers as a common first line of attack (which had worked for me for a long while until the heart suppression occurred) and we have ruled out cardiac problems themselves and pheo (if my urinalysis comes back normal; the results aren't in yet). He says "well, I still want to be sure we confirm the neurogenic diagnosis before treating it". Input, guys - - do I need to look around for a dysautonomia specialist at this point and if so how do I find one? (I'm starting to think there isn't one in a 5 state region around Denver! Can I call Vanderbilt or Mayo or Grubbs and ask for a referral doctor out here maybe? ) or should I just wait the 2 weeks and see what this cardio doc (Dr. Collins of South Denver Cardiology Associates) has to say. I intend to walk in to that appointment in 2 weeks with a few key POTS articles (like info from this site and Vanderbilt's website) and ask him to read them and compare them with the very detailed symptoms history I gave him before I even knew what POTS was -- I don't see how he could miss the match.This is so frustrating. After years of being unsure of what I had, I really am SO convinced (as is my husband who is also a medical researcher) that this is now truly what I have. I fit the POTS definition, as far as I can tell, perfectly, for the "hyperadrenergic" kind. Further, I think my mom has a milder case... after talking to her lately, I found out that starting at menopause her baseline pulse jumped up to about 115 (it had previously been much lower) and she started having dizzy spells where she thought she would faint and then her doctor put her on a betablocker and she's done well since (no dizziness and baseline pulse more like 70). I didn't know this, and she said she hadn't realized it was important to tell me until she heard me complaining of my symptoms. (Sorry so long again, after I promised to be more concise! I won't do it again, promise!)Advice, please?Carol Quote Link to comment Share on other sites More sharing options...
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