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  • Ignore chest pains??

    Hello all, I'm new to this board, but have been living with HCM for 20 yrs.
    I really wanted to post to find out what people's opinions are about the medical advice I've been given.
    I've been suffering disabling bouts of symptoms, mainly various types of chest pain, discomfort and tightness, also shooting pains in neck and palate. Most of these are excercise related and on bad days I have to do nothing except lie around, I certainly couldn't go to work if I had to. ( I'm at home with kids at present). Anyway, saw cardologist last week to investigate, and was told there are NO cardiac reasons for my symptoms! For the record my cardiac thickness is 1.5cm and has not changed over 20 yrs. When I asked whether I should just ignore and push on through these symptoms I was told "absolutely". Is this safe? It doesn't feel like it.
    Surely something must be causing this level of incapacity. The cardio also said he could not perform an excercise stress test because in hcm the results under stress are unreliable and therefore pretty meaningless. Is this true?

    I am reluctant to take this advice, it goes against the grain to carry on ignoring worsening chest pains and try to keep going. Yet it seems there is nothing the medical community can offer. The last line of investigation left to me is to start taking antidepressants in case these symptoms are all down to anxiety - if they are, then they should disappear. I'm willing to try anything to feel well, so I'll probably do this even though I don't believe it.

    By the way, I'm in UK so would also be interested in hearing if tings would be approached differently in the states. thanks for listening, Sky.

  • #2
    Re: Ignore chest pains??

    Dear Sky,

    Welcome to our community. Your gut instinct is right. You should not have debilitating chest pains. Many people are told that their pains are not cardio related and that it's all in their heads. Many also are put on antidepressants or anti-anxiety meds because they are misdiagnosed. You REALLY need to see a specialist. You can call Lisa at 973-983-7429 and she can help you find a doctor, even in the UK. Also, please check out www.cardiomyopathy.org. That is the HCM site for the UK. You should be able to find people there who can relate to you and your situation.

    You are welcome here any time and we are here for any more questions, comments, and concerns that you may have.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Ignore chest pains??

      Hi Sky, You don't say if you are seeing an HCM specialist or not. This may be one of your 1st moves if you are not and it kind of sounds like you are not. I say this because it seems that he or she is fluffing off your troublesome symptoms. I also was told many of these same things prior to being seen and treated appropriately by a specialist as well , the symptoms sound very familiar to me. I believe ,and know I will be corrected by the more knowlegeable if I am wrong , that septum measurement does not dictate degree of symptoms . We are all different and experience different responces to this heart disease ; therin lies some of the mystery. My septum was at 18 mm. and I have a severe form of the disease and very disabled. ( I had a myectomy 10-15-2003). My gradient was very high and the symptoms have consequently been very diminished post surgery. I like you in the past (and by a cardioligist) was told to push on and this was not anything to be concerned with... IT IS A BIG THING to be concerned with and you need to see someone who understands this disease. Please call Lisa at the office; number at bottom of this page if you can or send her a private message. Her full name if you haven't found it is :Lisa Salberg. Good luck and I know you will be hearing from knowledgeable individuals on this board. P.S. You did not mention what meds you take? Take Care, 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


      • #4
        Re: Ignore chest pains??

        Reenie thanks I guess we were posting to Sky at the same time you beat me so some of my info is repetative. It gave me a chuckle cause I type like a chicken pecking at grain. Take Care 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
          Re: Ignore chest pains??

          Sky, Pam is right about the fact that the degree of hypertrophy doesn't necessarily have anything to do with the degree of the symptoms. My husband's septum is 3.8cm and he has few symptoms. Others who have <2cm have intense symptoms. There are a lot of variables that only a specialist can decipher.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Ignore chest pains??

            It is very old school and outdated to think that chest pains are unrelated to HCM. I hear it all the time from cardiologists who only know what they read ten years ago.

            You will find a ton of help at cardiomyopathy.org as well as links to who to see there who knows HCM in the UK.

            Chest pains ARE a part of HCM and should not be ignored. It could mean that your heart is beating too hard and the walls are touching each other when it contracts. Medication can help that.

            Take care and welcome,

            S

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