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Dawn Find out more about Dawn
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  • #1

    New kid on block

    Hello!
    I am new to HCMA altho i have known about my condition,HCM, since i was 19. I am now 24. I have met 2 people who have this specialty but they were older than i am. At least it is good to know they have made it that long!

    I am on 50mg of atenolol daily which i hate. i think it makes me tired. I am always tired and if i lose sleep i can instantly feel it in my heart.

    I love sports, but have been limited to volleyball. i keep trying some more aggressive ones but drop out after a few minutes when i get dizzy or have chest pains. My cardiologist really does not like when i do that and i have cut back alot. I really want to stay active and wonder if the only options are walking and aqua aerobics which i do occasionally.

    I would love to hear from others about how you deal with this.... i have dealt with the fear of sudden death. I don't think about it too much anymore, prob because i have become accustomed to the idea.

    I work in a hospital as a clerical specialist and PCT in the surgical department. It is a great job for my condition, except i don't get alot of exercise.

    Have any of you found any alternative meds for treatment? Is it a possibility? I have a wonderful cardiologist but he is of course treating this medically.

    Sincerely,
    dawn
    Tags: None
  • #2
    options

    Dear Dawn,

    Welcome. I'm 34, my brother is 29 and we were both diagnosed early. There are others around your age here, too, from time to time.

    First of all, I want to let you know that only 1-1.5% of _all_ HCM patients die suddenly each year. The only news you hear about HCM is when someone drops, however, this really is NOT the norm. There may be other, outdated stats out on the web, but this number is the best and most recent that takes into account all the mostly healthy HCMers that are out there (and they are out there).

    Secondly, please see a specialist. You will hear this and read this alot. This is because HCM is very complicated and very individualistic. No regular cardiologist will ever see enough HCM patients to get a handle on all the variations and situations that need to be addressed. You can call the office at 973-983-7429 to talk to Lisa about who to see that would be a good match for you.

    As for your options: seeing a specialist will open up more treatment options (probably) that your regular doctor is aware of. You can also get an honest-to-god real evaluation to see if you really do have any sudden death risk (and get the right treatment if you do). HCM is NOT a death sentance. There are other medications to try as well.

    HOwever, your dizzy spells are a worry and you shouldn't push yourself that hard. Yoga, tai chi, etc would be better options for you to look into.

    As for alternative medicine: accupuncture and tai chi are excellent as they open up your meridians to unblock your energy (HCM is a big energy block in many ways). My aunt swears by accupuncture (she has HCM).

    Also, diet becomes extra important to HCMers. Beta-blockers and most other heart meds are rendered useless or worse by grapefruit/juice. Many with atrial fibrillation report they have fewer problems when they cut out dairy products. Eat smaller meals more often, eat salt!, get a balance of electrolytes, drink lots of water (not juice), avoid caffiene in any form, and pop and alcohol and cigarettes. Some people need to avoid eating too close to going to bed (2 hours or less) and avoid frozen drinks/foods (cold shocks the system).

    I hope I've cleared up a few things. Please keep us posted and please see a specialist.

    take care,

    Sarah

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    • #3
      Dawn,
      welcome to the board. Their are many like you here...so you can feel at home.
      RE volleyball, not the best idea - Yoga, Tia Chi and other similar programs are great ways to stay in shape, keep tone and not stress your heart.
      If you have not been to a specailist I would sugget you do so. A good evaluation can be all the difference in quality of life and help to eveluate your level of risk for sudden death.
      Call the office to discuss centers to investigate.
      Best wishes,
      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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      • #4
        Hi Dawn, Volleyball may not be a good exercise when you have HCM, it gets the heart rate up very quickly several times over a short period of time.
        Another alternative to walking or aqua is cycling.
        It's what I do, but check with your HCM specialist first.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

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        • #5
          oh, yeah

          oh, yeah, Harvard. Yeah, Harvard is all right if you are into, you know, some of the best medical minds in the nation. Yeah. Ok. I'll give you that.

          Somehow they managed to slip my mind! Can you believe it?

          Sorry, Harvard!

          S

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          • #6
            wow

            wow. I'm sooooo out of it. I posted the above response to the wrong thread. Comes from doing about 18 things at the same time.

            oh well.

            S

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