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Finally got with a specialist


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  • Finally got with a specialist

    Lisa, thanks so much for recommending Dr. Lever - we (my son, Casey, and I) spent the entire day today at the Cleveland Clinic - what an awesome place. And Dr. Lever spoke VERY highly of you and the work you have done for HCM. I found out much more about my condition and my son's - I have HOCM - Casey has HCM, now without obstruction due to his septal myectomy. Dr. Lever, however, is very concerned about him because he has "blunt blood pressure"?!? during exercise. My husband wants him to have another stress test to make sure - doesn't feel like Casey really pushed himself and got true readings - I had slight "blunted blood pressure" but he didn't seem too worried. I do have to go back tomorrow for more testing - trachelecho or something like that - sees something that concerns him - And I will go prepared with questions. This condition just leaves one scratching the head - he also says there is now a neurologist who is very interested in talking with those of us who are experiencing headaches - may be connected to the HCM. Also, he has changed my meds from Verapamil to Corgard - after looking up the description of this med, I'm unsure - anybody using this and if so, what is it doing for you? Thanks again for the wonderful information provided by this message board.

  • #2
    s'all good

    Dear Betsy,

    I'm so glad you are seeing Dr. Lever.

    I'm VERY excited to hear someone is finally going to look into migraines and HCM -there are a lot of us here who have migraines. The Corgard should actually help your headaches. I've been on it for 10 years or more, and on some kind of beta-blocker for 20 years. Bad side effects are very rare. They are life-savers for many people!

    I think that "blunt blood pressure" means that when you exercise, your bp is not spiking (increasing) like it is supposed to. This is a risk factor for sudden death (1 of 5) --see my reply to Reinhard "To ICD or Not ICD" for the rest of them. Don't freak out---you need lots of risk factors to qualify for an ICD. And Dr. Lever will suss them all out for you.

    Keep us posted.



    • #3
      Linking other thread that lists the 5 factors:

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


      • #4
        I am on Corgard and have been for about 15 years. It does not cause any problems for me.
        RE the stress test - if the docs did not like to test they would ask for it to be redone... the concern is the the B/P needs to rise with activity and if it does not or if it goes up then drops off this has been found to be a risk factor for sudden death. If he is concerned about this he may suggest an ICD.
        Let us know how you make out and send my best to the HCM team at Cleveland!
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)


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