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  • Syptoms appearance

    Hi to all,

    I am glad to have found this great community (kudos to Lisa!). I have been having HCM for more than 20 years, with no major symptoms so far if you do not count some palpitations and chest pain (not more often than 2-3 times a year). I have been on beta blockers at 100 mg/day for 15 years and it seemed to work for me. Recently I went to see Dr. Lever at Cleveland and he said that I could be followed at the moment. Only risk factor for SCD at the moment is the septum at 33 mm. I have never had episodes of VT on Holter until last month. I am wearing a Holter at the moment. If the VTs continue, maybe we will have to consider an ICD.

    Problems started when 2 months ago I got 2 days of strong chest pains. I was worried but, as it passed, I forgot about it. Then last week I got strongly increasing chest pains accompanied by shortness of breath. I have never had this before and, naturally enough, I panicked which also caused something like a panic attack. While before the symptoms I was easily able to climb 3-4 stairs of steps, I was now unable to climb even two. The situation now is a bit better but I still feel chest pains and some SOB. The good news is that at least I have no problems sleeping.

    I went to see my local doctor, quite an experienced cardiologist. He took it quite lightly and said that it could be caused by stress and fatigue (and I did have a lot of stress at work and at home lately). This is why he did not change the dosage of Tenormin. He will see the results from the Holter, echo and exercises in two weeks and then decide. Problem is that meanwhile I am not improving that much...

    My question to you is: what are your experiences with symptoms? Do you have symptoms that come or go, or do you get them constantly? Did you have your medication changed when you got your first more serious symptoms> When did you get more serious symptoms for the first time? Of course, if you have any improvement ideas they are more than welcome

    Thanks a lot for sharing your thoughts, wish you all a lot of luck and improvement!

    Emil
    DOB 1968
    Diagnosed while in army 1989
    Dad died from heart failure aged 54
    Septum 33mm, Tenormin (atenolol) 100 mg/day

  • #2
    Re: Syptoms appearance

    Emil.

    I am glad you have the HCMA as a place to ask your questions. Symptoms do come and go and for some of us they just come and get a bit worse over time. I too see Dr. Lever and two times over the years he has added two additional meds to help manage my symptoms. Hopefully your Holter will help your cardiologist see what is going on with your HCM.

    Incidently I used to live in Munich and traveled to Austria several times a year. I still miss living there.

    Gute Besserung!

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

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    • #3
      Re: Syptoms appearance

      Hi Emil,
      Personally, I would call Dr. Lever at the Cleveland Clinic and let him know about your symptoms, rather than relying on your cardiologist who isn't an HCM specialist. There are so many great cardiologists, but they aren't HCM specialists and often don't understand the condition or sweep your symptoms under the rug. Your symptoms could be the signs of your HCM progressing, or perhaps nothing at all, but it's best to have the HCM specialist aware of them so that he can determine what is going on. I would even have your latest test results sent to Dr. Lever so that he can check them rather than relying on your local cardiologist.

      That's just my two cents. Good luck to you!

      Kaye

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      • #4
        Re: Syptoms appearance

        Hi Emil,
        I agree: symptoms come and go. And some of them can be quite variable -- a person can be feeling fine and then very suddenly be light-headed, or short of breath, or have chest pain, for example.

        It's wonderful that you've been 20 years without major changes in your symptoms. Some people have experiences like this, and others have symptoms that don't change for a long time and then do change, fairly suddenly.

        I agree with Kaye: it would be a good idea to consult Dr. Lever about this. He's very good about phone calls from patients.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: Syptoms appearance

          Thanks a lot,guys. I do intend to call Dr. Lever. I intend to wait for the results from my Holter, Echo and Stress Test to come first in 10 days time so he has more material to make his decision on. I hope it will be OK for him to just talk to me on the phone for couple of minutes.
          DOB 1968
          Diagnosed while in army 1989
          Dad died from heart failure aged 54
          Septum 33mm, Tenormin (atenolol) 100 mg/day

          Comment


          • #6
            Re: Syptoms appearance

            I am sure if you call his office ahead of time, given your distance and time zones, etc. you could set up a time to speak with him in advance. I would recommend doing that...discuss with his secretary first.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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