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Reflux and HCM

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Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
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  • #16
    Yes , this is a subject I wish I could diregard but unfortunately it has been quite troublesome to me of late. I did think that the correlation between how I was not feeling too well cardiac wise was perhaps playing a role in this new problem. Diverticulitis emerged last fall as I was beginning to resume some very troubling HCM symptoms. What I have noted is the overwhelming provacation of stress and how it seems to get the whole thing going in the wrong direction. One piece of disturbing news or fright as with a sudden adrenaline rush sends my whole GI system into one big spasm. Now the doctor telling me to get rid of my stress does nothing. She obviously does not truly know me or she is thinking of the old me who faced everything with an iron clad forcefield. I noticed over the recent year that I have this startle reflex that goes on prematurely , like a flight or fright response. I know my sympathetic nervous system is somehow on heightened alert for some reason and I can not seem to get it in check. I am calm , not freightened of anything and yet it happens . It seems as much as I try to counteract it , my body is highly reactive to stimulation of any kind.

    I know this all sounds kind of weird but , by sharing it maybe one of you knows what I am saying. This startle thing is not like me at all, it is like an infant in their early reflex days, when they throw up their arms.


    Oh well now you all know I am certifyable !!
    Thanks for reading about my goofy system.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #17
      Boz,

      Where did you found that information? Seems relevant (for me) as some foods (dairy products e.g.) nearly always induce Afib with me - with or without GERD responses.

      Question could be: does HCM make us more vulnerable for vagal induced A-fib? If there is a correlation, would dieting, Nexium etc. lower the incidence of A-fib and thus dependency on beta blockers, blood thinners etc.

      Ad
      \"Hope is disappointment postponed\"

      Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

      Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

      Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

      Meds (current) sotalol, dabigatran, furosemide.

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      • #18
        AD-

        First: HCM patients suffering with AFib are presumably not suffering from idiopathic (spontaneous - for unknown reason) atrial fibrilation. That is to say that their diagnosed disease is most likely also the cause of their irregular heart beat.

        Vagal AFib is assumed to be one explanation for idopathic AFib so much of what is written about it may not be relevant to us. But remember it is a theory not yet embraced by the medical community and a lot of real research is needed.

        The web site I found this info on is often refered to by other AFib discussion groups.
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant

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        • #19
          Hi Pam,
          I have something for you to try, but it will take some work and self training. I hope it can be made to help you. I have seen it work, and work well, in others.

          First, think of the greatest relaxing thing you can think of – be it laying on a beach with the waves gently breaking as they kiss the shore, - or getting a worm oil rubdown by a great looking guy with marvelous hands, - or being gently carried into harbor on a warm fall day, with just enough breeze to generate a tinkling at the cutwater and carrying with it the smell of autumn leaves being burnt and the far off barking of a dog, and all the trees on the shore a blaze of reds and browns and yellows and greens. Think about it, and find the thing that reaches you personally. It will be yours alone, and no one need ever know, so leave your inhibitions behind.

          OK, once you have that – let’s call it your secrete place – you next have to train your fight/flight response to a fright, so that you immediately flee to your secrete place. Of course in a true emergency you have to take care of the situation before you make your getaway, but then almost all the frights you are reacting to are more tempest in a teapot then anything else.

          With some practice you will be able to avert most unwanted bodily reactions to the initial fright. In time you will even find yourself plopping down on the couch for a few minutes rest and going to your secrete place – and it actually will make you feel better then you would imagine. There truly is such a thing as mind over matter, and you can make it work for you with just a little practice. Hope it helps my friend.
          Burt

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          • #20
            Lisa

            You started another "hot topic". Very Interesting! I was dx w/HCM, about 16 years ago & started on Beta Blockers. About 12-13 years ago I was dx with GERD & started taking meds. My symptoms of both gradually increased & worsened over the years. I do have endoscopy done about every 3 years to check my esophogus. Many times I thought I was having GERD episodes, when in fact it was my HCM. At any rate, a few months after my Myectomy, when my Toprol was cut back from 400mg/day to 200mg/day, my GERD seems much improved! Actually I was just thinking about this the other day.
            I'm in favor of feeling less symptomatic, regarding any of my "little problems"
            RONNIE

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            • #21
              I did not post on this topic before because I was in transit between US and China. But, this discussion has certainly been interesting to me. I was diagnosed after an upper GI x-ray series with GERD as well as a hiatal hernia this past summer. It was done to try to eliminate digestive problems as the source of the pain under my breast. The diagnosis added another pill to the many, but did nothing to help the pain. So my GP and gasterenterologist both think the pain is HCM. As a far as I am concerned, don't know, don't really care, would just like to get rid of the pain!

              I do suspect that the GERD predates my beta blockers, however, as I used to have fairly severe reflux, but had learned to ignore it and the problem seemed less for the past several years. However, I learned that some people report less pain after the problem worsens due to scarring of the esophagus with time.
              Rhoda

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              • #22
                This is really interesting. I have only been taking beta blockers since October when I was diagnosed with AHCM. The diagnosis has made me much more sensitive to anything going on around the heart - only symptom I ever had (or thought I had) was the occasional beat flutter lasting about 2 seconds about once every couple of weeks. Since I have been on the BB's, I have a burning sensation in the chest approx 1 hour after eating - I have assumed this to be heartburn. The amazing thing to me is that I can now burp, I have never been able to do this before. I am firmly of the opinion that these things are related. My bout of palpitations which caused the diagnosis were caused I believe by me exercising immediately after a meal. I think they were also caused by an excessive consumption of nuts. Two weeks before the palps started I commenced a new regime of nut eating - god knows why. I think they helped trigger the extra heart beats. Since taking the BB's, I seem to have regular chest pain - a strange sort of muscular ache which is relieved when I take anti acid tablets. My sleeping has also been affected - I used to sleep the moment my head hits the pillow. It's more difficult to get off to sleep these days.

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