icthus Posted July 21, 2009 Report Share Posted July 21, 2009 I've had some life-threatening events over the past few weeks. Idiopathic anaphalactic shock, suspected variant angina, and no one knows what kind of POTS I have - possibly low-flow. If they give me mestinon for the angina, it might be contraindicated if I have too much acetylcholine. It goes on and on way over my head. And both want me to go to Vandy. This might as well be the moon.I'm from the Chicago area, and I have a driver to get me there, but how do I proceed? Also, I've had several near-death (minutes before being restored to breathing, etc) events and I'm very concerned their testing will be fatal if I do indeed have variant angina and/or MCAD - which is supposedly difficult to diagnose but all symptoms indicate it.Prattling on. My two wonderful doctors have both told me - independently - that I need to go to Vandy. What's the next step? What doctor? EP, allergist, endo, neuro - do they work together or do I have to do all the coordinating? etc.etc.etc. OR should I stay with Froedert in Milwaukee - they have a neuro clinic and I like my neuro there - and they have EP's on staff. And Froedert is only 1 hour away. Also, I'm currently in a place where any encouragement would be most appreciated. I'm just a little overwhelmed and somewhat alone - not married.Thanks for your input Quote Link to comment Share on other sites More sharing options...
bjt22 Posted July 21, 2009 Report Share Posted July 21, 2009 I have variant angina, too. Like you, I was very, very concerned about Mestinon as it works on acetylcholine receptors. I know that my "variant angina" certainly follows the course of many of the cases described in the literature....its an overwhelming parasympathetic response to sympathetic over stimulation. Text book. For years, this kept me from wanting to try Mestinon. Having been on it for over a year, I can tell you that I have had no ill effects concerning the angina. It's no worse and no better. I do benefit from this drug, however. Not a cure all, but definitely improves a number of my symptoms. As to the angina? Mine is better with a combination of a beta blocker and catapres(clonidine). Blocking the over stimulation of sympathetic activity seems to really work towards blocking the over response of the parasympathetic reaction. Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 21, 2009 Report Share Posted July 21, 2009 I may have variant angina and definitely have weird allergic reactions. I take norvasc for the angina, midodrine and florinef for ans stuff. an odd combo to many. i'm allergic to mestinon. if it were me, i'd go where there are the smartest, most knowledgeable docs. if that's vanderbilt, so be it. i would not let someone do provocative testing for the variant angina-- too risky. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted July 21, 2009 Report Share Posted July 21, 2009 I'm going to echo what Mkoven said...go where you have to go, if possible. I'm fortunate in living in the city with my specialist. If you are questioning information you've been given, go where you need to go, if possible. Some of us are very good at researching our own information, but if you are unsure of this approach, or if you are unsure of your doctors' accepting this information, well, do what you need to do in order to get it. That said, don't be surprised if you receive information that you might consider "incomplete". That's often the case as far as I'm concerned. In the end, I usually assume near total responsibility as far as trying new treatment goes. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 21, 2009 Report Share Posted July 21, 2009 I think mestonin has a double action on the parasympathetic system while also attenuating the sympathetic reaction to standing and reducing the sympathetic drive to the heart. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted July 21, 2009 Report Share Posted July 21, 2009 I just want to give you some support - it sounds very scary what you have been going though. I've only had one near death experience and that was more than enough for me. Can't the two doctors who want you to go to vandy start the process or at least steer you in the right direction as far as who to see? It seems to me that they should be the ones setting this up for you. Hang in there. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 22, 2009 Report Share Posted July 22, 2009 perhaps there are ways to determine if you have low flow POTS. Blood volume, BPI, angiotensin II levels could be indicative. How do you respond to tumeric ( a potent nitric oxide synthesis inhibator)? Quote Link to comment Share on other sites More sharing options...
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