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  • chest pain

    Hi guys....
    New to this.. I am a 26 year old girl and was diagnosed with HCOM late last year, have been taking noten but found i was very tired, depressed etc so am now taking verapamil, feeling better in every way except now i experience chest pain quite often, is this normal or dangerous??
    seeing my specialist in a few weeks but wanted to get some of your feedback for now
    Thanks lots
    Dee from Sydney Australia
    Dee Sydney Australia

  • #2
    Many with HCM experience chest pain. If this is new to you then the doctor should be notified right away. Those who have known about their HCM for a long time and have become comfortable with the "usual" aches and pains can tell if their chest pain is worrisome or not. Good luck and I hope you feel better soon.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Well, yes chest pain is not unheard of with HCM but you don't say how often or how strong the pain is or how long it lasts.

      You should really call your doctor's office and tell them about your symptoms as they will probably want to see you much sooner, rather than later.

      Chest pain should always be taken seriously.

      let us know what the doc says.

      S

      Comment


      • #4
        Hi Dee,

        Chest pain should be reported to your doctor as soon as possible.

        It is rare but does occur that some individuals experience coronary artery insufficiency as well as HCM. Testing as in cardiac catheterization may be key to ruling this out. I have always experienced chest pain with my HCM as others will also report. I have additional problems with what is called small vessel disease. Having the right doseage and mix of meds can if it is small vessel disease , help to keep the chest pain in check. It is not unusual to have to adjust meds for this symptom of particular HCM.

        The process by which they feel this occurs is that the myocardium gets thick and to feed the newer thicker part, new vessels develope( collateral circulation). It never was and is not mother natures intention that these smaller vessels would be called upon to feed oxygen to new thicker deeper parts of a remodeled HCM heart at same demand levels as the rest of the myocardium. The demand for oxygen / nutrients is none the less still needed and at a negative in the thicker portions ; hence the chest pain or squeezing spasm sensation of vessels trying to get their share. Now this said , please call your cardiologist and report this symptom ASAP.

        Let us know how it goes. We are here for you.

        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

        Comment


        • #5
          Pam,

          Have you went to the ER about your chest pain. If so were your Troponin I levels elevated? I ask this because you mention the thing with the collatoral arteries.

          I've been told I have microvascular disease on top of the HCM. The chest pains from this is ruining my life and was wondering if they have any medications for that!

          Thanks,
          Mary S.

          Comment


          • #6
            Mary , no I have never gone to the ER for my chest pain. So I have not had tropin levels to my knowledge. When I was first diagnosed my chest pain had been an issue for some time. My so called cardiologist , back them called it gerdl. I suffered a lot but would always deny it to myeslf. Back then I discovered for me that extra beta blocker eased the pain intensity , and fortunately for me my BP did not bottom out. By the time I had a thalium stress test I was already at 150 mgs of Atenolol. The chest pain was more manageable. The thalium test showed an area of very poor perfusion on the lower posterior of my heart. They did a cath and ruled out coronay blockages and told me it was small vessel disease due to the thickening. There was a point following that they gave me NTG to use. It did not always work for sustained chest pain and as we know NTG can get us HCMers into worse issues. They increased my BB to 200mgs and later added a CCB which seemed to help for awhile. Then when I went over to TUFTS they worked my BB all the way up to 400mgs for a short time ( it made me depressed so it was lowered to 350 mgs) . I stayed at those levels with moderate control of CP. The pain still came , but was not lasting as long. Then I had my myectomy. Things as you know were good for about 4 months and the chest pain came back with a vengeance. I went from 75mgs of BB and am now up to 250mgs and am back on ( since March) a CCB as well. The chest pain at times is unbearable and persistant , It does dissipate for me if I get into bed and put my breathing mask on. My med changes are always about chest pain return or intensity. I was scheduled for a sestamibi but cancelled because of my colon issues and it will have to wait until after all the surgery. Any stress intensifies the chest pain and tends to then malinger. As I have had clear catheterizations , I do not fear it - I used to though , I kind of think of my other pains that I have survived( like labor for 36 hours and finally getting a c-section for an 11+ pound baby boy) for me that helps to get me through it. I do play with my BB as in a prn here and there if my heart is pounding and the chest pain lasts. I am one of the fortunate ones ( my BP does not bottom out) and my system tolerates it.( for now). I wish the meds worked for your small vessel disease and that your BP tolerated the higher doses. Just hang in there Mary. This has probably not been too helpfull to you. I am sorry. Wish there was something I could offer.

            Thoughts and prayers,

            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

            Comment


            • #7
              Hi Dee,

              I can't answer your questions but I can recommend good HCM specialists in Sydney. I am in Melbourne and I have flown up to the HCM clinic at the Royal Prince Alfred. Look for Dr Mark Ryan or Chris Semsarian - they know the most about HCM in Australia. Most cardiologists only have a rudimentary understanding of HCM.

              Take care,

              Paul
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment


              • #8
                Thanks everybody for your advice, Paul, i definately will look those Specialist's up.... Thank you!
                Oh yeah... i meant HOCM not HCOM....oops!

                Thanks heaps
                Dee
                Dee Sydney Australia

                Comment


                • #9
                  Pam thanks for the advice. Sorry I didn't reply sooner. I was turned down for disability! Apparently, because I'm young and educated I am therfore not disabled. The statement said that because I could communicate with people and take care of my activites of daily life that i was not disabled. So now I don't know what to do. My doctors won't let me work. My car payment is due, and my phone! If I loose either I'm in big trouble.

                  I'm still having issues with my blood pressure as well. Even with the daily dose of Florinef my bp is about 88/60. I am on a whopping 25mg of toporol now. Imagine my bp without the florinef! I'm so tired these days too. I'm typically not the kind of person who spends my day in bed but lately I don't crawl out until 11 or 12 o'clock. My chest pain is occuring more often. Less intensity but more often.

                  I've called Dr. Maron's office a couple of times and still have gotten no response. I'm begging for help here because I don't know what else to do and even scarier I don't think my doctors do either.

                  Well thanks to all,

                  Mary S.

                  Comment


                  • #10
                    Dear Mary,

                    From what people have posted here, it takes about three tries to get listed as disabled. Use the board's search function to find the disabled posts and mine them for any useful info (I think there are tips, etc) in them.

                    Keep fighting. I know you are exhausted but there has to be a light at the end of the tunnel.

                    hugs,

                    S

                    Comment

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