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Jimmy Happily married two daughters three grandchildren. I am a minister we also have a small farm Find out more about Jimmy
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  • how long for med work

    I have been taking beta blocker and calcium blocker for several week no relief still have chest pains shortness of breath feels like a knife in my back right between my shoulder blades also at times it feels like my lungs are filling with fluid.heart feels like it running away doc say keep taking med come back in two weeks.I am new to hcm is this the way its always going to be .Its a everday thing no end in sight

    Thanks
    Jimmy
    Myectomy January 8 2014

  • #2
    Re: how long for med work

    I would get back to your doctor quicker than 2 weeks if you are having bad symptoms... I know that Verapamil didn't really work for me and seemed to lead to chest congestion. Is that your cardiologist or GP?

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    • #3
      Re: how long for med work

      Its my cardiogist it seems like they think its no big deal as for me I am not use to staying in the house all but 2-3 hours a day this heart group is one of the best in Alabama.I just do not think they understand how much pain I am in as long as I do not move around I can tolerate the pain just any little thing I do brings on the chest pain and galloping heart and shortness of breath.Called the office to talk with the doc about it the nurse said you should not be feeling that bad with the meds you are taking.
      Myectomy January 8 2014

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      • #4
        Re: how long for med work

        They may be "one of the best in Alabama" but it might be time for you to look for a new cardiologist - sounds like they are not taking you seriously. Patients and doctors have to work together if there is to be an optimum outcome.

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        • #5
          Re: how long for med work

          I think you should ask to see a heart specialist for Cardiomyopathy you need someone who knows about the disease and can teach you about it. It's not always going to be like this they just need to find the right medicine for you. I've had to put my foot down with some doctors too because some just don't understand - tell them you're suffering everyday and you must be seen as soon as possible to sort this out.
          Diagnosed with HCM @ 6 years old.
          Father & 2/5 sisters affected
          ICD Implant in 2011
          Evaluation for Transplant in process.

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          • #6
            Re: how long for med work

            Jimmy, I am on Verapamil and my cardiologist told me to stick with this to make it work through the side effects. Being stubborn I tried a little to hard and ended up spending time in an emergency clinic. End result was cutting back on the dosage and the worse elements of some of the side effects stopped. My lesson learned on being to stubborn to stick through and not listening to my body. You know what the current impacts are on you and need to push for resolution.
            Last edited by Hugh W; 08-04-2013, 07:09 PM.
            Hugh

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            • #7
              Re: how long for med work

              With HCM, we all react differently to the meds - what works for some, may not in all. Its not uncommon to go through a trial and error phase in finding the right dosage & mix, but if at anytime its not working or making you feel worse, then its obviously time for a change.
              This is why we stress seeing and EXPERT in HCM preferably at a Center of Excellence. https://www.4hcm.org/hcm/finding-an-...pecialist.html
              Keep us posted !
              Marc
              Diagnosed @ 48
              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
              AICD - Valentines Day '08, Spark Plug replaced 11/14
              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
              Quietly going insane . . .

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              • #8
                Re: how long for med work

                Thanks everyone I going to have a heart to heart with the doc tomorrow this crazy feeling this bad all the time.How are the doc at emory compared to Cleveland.I want to go to the right place 3 hours to emory or ten to Cleveland clinic
                Myectomy January 8 2014

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                • #9
                  Re: how long for med work

                  Following what Hugh W has said - I've been on Verapamil for about 2 months now throughout those weeks they have been constantly increased. I'm alright for the first week then go downhill with a range of symptoms restricting me from doing day-to-day things. You're not the only one! Sometimes the docs need to play around a bit with the meds to find what is right for you. My sister was admitted to hospital once to change hers and with the 'better' ones they put her on she couldn't breathe!

                  Don't feel too stressed about it and when your body feels worn down rest it out.

                  Good luck
                  Diagnosed with HCM @ 6 years old.
                  Father & 2/5 sisters affected
                  ICD Implant in 2011
                  Evaluation for Transplant in process.

                  Comment


                  • #10
                    Re: how long for med work

                    Keep pushing for a solution. I was on beta blockers at various doses for a year, and I kept telling my doctor the same thing - the symptoms were not getting better, but worse. Finally, he agreed that after a year that I was not responding to the beta blockers, so he put me on Verapamil. I've been on the calcium channel blocker for 3 weeks now, but I'm still not seeing any relief at all and experiencing increased chest pain. I just secured an appointment at the Mayo Clinic for the end of this month with Dr. Ommen. I am determined to find a workable solution to this problem, as like you, I am unaccustomed to such a restricted lifestyle.

                    Take care,

                    Gail

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                    • #11
                      Re: how long for med work

                      Gail I hope you get good news I go back to the doc Friday we are going to get serious about this
                      Myectomy January 8 2014

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                      • #12
                        Re: how long for med work

                        Originally posted by Jimmy View Post
                        Gail I hope you get good news I go back to the doc Friday we are going to get serious about this
                        That's great news, good luck. I (like most HCM'ers) have found that a great % of doctors and even cardiologists (while they may be great at dealing with 'traditional' cardiac issues) don't understand the intricacies of HCM and it's treatments. As mbcube and others have mentioned, there is no one gold standard for drug therapy for HCM and it tends to be a very individual thing. Also, there can be points where drug therapy can't help enough which is where I found myself last year. Fortunately, my cardiologist knew enough of HCM to get me referred to a specialty program for assessment and and three weeks later, I had my myectomy which has been a blessing.

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