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John Find out more about John
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  • Howdy

    Hi, I wanted to introduce myself. I am a 40yr. old married man with 4 beautiful children living in Minnesota. I was "officially" diagnosed with HCM in March of this year. It started with a physical about 3 years ago - our family doc heard a murmur and referred me to have an Echocardiogram done. At that time, my septal measurement was 28mm. I never kept my cardiology appointment. 3 years later, this past March I went to our family doc again, this time to get an anitbiotic for an ear infection. The doc heard the murmur again, and referred me for another Echo. This time my septum measured 33mm. Needless to say, I kept this cardiology appt. They did a 24hr. holter test, and found a Ventricular fibrillation which occured 1X during the 24hr. test. I have been taking a Beta Blocker (Toprol XL (50mg)) once each day. My cardiologist is trying to assess my risk for sudden death...before recommending an ICD. I have thought about going to the Mayo Clinic for a second opinion since I live fairly close ( thought I ought to take advantage of the technology...).
    One thing I would be curious to know...I have definitely felt more tired since taking the Toprol...but also, my wife tells me that she has noticed a significant mood/personality change. I'm not as "upbeat" as I used to be and I have been having bouts with depression. I seem a lot more sensitive and just about any little bit of teasing from co-workers and friends seems to really bring me down. Has any one else experienced this? I have another cardiology appt scheduled for the end of Oct. and I plan to discuss this more with my doctor. Thanks for a great website! I'm glad I found it!

    Dios te bendiga,
    John.

  • #2
    Re: Howdy

    Dear John,

    I've considered moving to MN to be close to the Mayo, but the mosquitos and the cold would kill me. GO GO GO!!! They are amazing and can evaluate your ICD need asap.

    Also, what you describe are all symptoms of beta-blockers. You should talk to your doctor about trying a different one (they are all a bit different and you may tolerate another one better) or switch to a calcium channel blocker.

    DO NOT STOP TAKING the beta-blocker cold turkey. It can make you worse. Some doctors don't even know this, so wean yourself off of it when/if you switch.

    Stock up on health and life insurance for your kids and then have them screened, too. Ditto your siblings and parents.

    S

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    • #3
      Re: Howdy

      Welcome to the HCMA, John. We're here for any questions you might have. It looks like you've been doing your homework already. I second Sarah's "Go Go Go." You will be seen by some of the best HCM doctors in the world there. Since you live so close, don't miss the chance! I hope to hear more from you soon.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Howdy

        John, Welcome. You are located near to some excellent resources for HCM management. Do take advantage of this. You might find it quite helpful and certainly informative to talk to Lisa first at the HCMA office. She can help you prepare for a visit thru additional info and may have suggestions as to contact people in the area(not just at Mayo). Linda

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        • #5
          Re: Howdy

          Hi John! Bear in mind every person is different and medications affect each person differently but I too had lots of side effects on Toprol XL. It was great at controlling my symptoms but I could not handle the exhaustion. The bad part is I'm on a different med & I'm still exhausted but there are many more meds on the market to try.

          I don't live near a specialist but if I did I would not walk but run to their office for another opinion. YES----- GO!

          sheryl in SC
          Sheryl
          HOCM

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          • #6
            Re: Thanks for your responses!!

            Everyone,
            Thank you so much for your responses! This has been a great blessing already. I was beginning to think there was something seriously wrong with me psychologically, but I can now say with confidence after hearing from some of you and thinking through this with my wife, and after ALL the research I've done, that the Toprol XL is having some serious, mood altering side-effects. I just completed my 2nd Holter test, and my appt. is
            schedule for the end of Oct. I will be talking to my cardiologist very openly about my experiences with this med. It will be interesting to see
            if the Toprol XL has has the desired effects of relaxing each heart contraction and if there are any more fibrillations. Regardless, although I can find ways to adjust and deal with the fatigue and lethargy, what I can't deal with is the depression, the "fogginess", the inability to think clearly, significantly slowed reaction time and blurred vision, etc. etc. My whole personality has changed. Thank you for a place to share experiences and seek support! I greatly appreciate finding this website..Keep up the great work Lisa! It's meant a lot to me already in such a short period of time. By the way, when does someone go from "newbie" to "contributor in training"???

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            • #7
              Re: Howdy

              John. When I first went on beta-blockers I was mildly depressed for about 3 months. That was years ago and I really do not feel depressed at all.

              I wish you the best. You are at THE right place for helpful answers to your questions.

              Peace,

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

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              • #8
                Re: Howdy

                your "heart" status changes depending on how many posts you create or reply to. the only people who have all the hearts are moderators. I tried to keep my extra heart when I stepped down (sort of moderator-emerita) but no dice.



                s

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                • #9
                  Re: Howdy

                  Sarah, I guess the admin are the only ones with all hearts, unless we "lowlies" are really chatty. I only have 4 too.

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    Re: Howdy

                    John,
                    A few thoughts... YOu have just got hit with some MAJOR news... YOU HAVE HCM. This alone is going to hit you and take you for a ride on the emotional roller coaster - add to this a beta-blocker (which can have side effects including fatigue). YOu have to give yourself time to adjust to all that is new in your life.
                    Seek professional help if you feel it will help you, talk to a mental health prof. to work through all these "New" issues in your life....or give yourself time to adjust - it can take awhile.
                    We all understand- -we have been there.... and we are here for you!

                    Be well,
                    Lisa
                    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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                    • #11
                      Re: Howdy

                      I have not read in your post whether you have had your daughters checked or not. This should also be on your to do list as this is hereditary. Your children can have the disease and not have any symptoms. Good luck with your appointment, I have been on Metropol for over 5 years now, and I still get a little moody at times when I overdo it.
                      Life is too short to worry about the trival things in life, So live life to the fullest.

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