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  • Random thoughts and questions

    Last week, I had a second echo done (thanks for the suggestion Lisa). Actually what happened was that my cardiologist forwarded my tests to the head of cardiology of a major medical university. She was expecting that he would immediately decide to do an alcohol ablation (he’s the #1 local guy for ablations, and has learned the procedure directly from Spencer in Charleston). However, when he called me to discuss my condition he indicated that I most likely needed a better drug therapy rather than any procedures. But he did want to do a second echo using equipment that he is used to, with technicians that he trusts.
    I am presently waiting to hear back from that test. My only concern was when I point blank asked the technician what my septal measurement was, she said between 1.8 and 2.0, which is thicker that my first echo.
    My thoughts (and hopes) from this test is to accept the suggestion to change my drugs. However, if any of the procedures are recommended I am going to head up to the Mayo (or Tufts) and do a full day of testing. I will not have any type of surgery unless it is suggested by people who truly know HCM. But since this guy is the head of cardiology, I can go with his recommendations on drug treatment.
    Anyway here are my current questions:

    1- The most annoying symptom I have is fatigue. By mid afternoon I am very tired. Some evenings I’m non-functional. I have read other posts that seem to indicate that many of the drugs I potentially would be taking, may also make you tired. Are there any drugs that do not have this side effect? What is the best drug in this regard?
    2- Has anyone had any success with dietary supplements to help with fatigue?
    3- On a very rare occasion, perhaps 3-5 times a year, I will awake from a nap with a start. Then something happens. My whole body seems to go thump. It’s like a switch was thrown for a tenth of a second. Anybody else have this symptom? Do you think this has anything to do with HCM?
    4- Since neither an ablation or myectomy do anything for the risk of sudden death, do any of the drugs help?
    5- Is there any steps or lifestyle changes that can be made to limit the potential for sudden death?

    Appreciate any insight that you can give.
    Fx

  • #2
    Re: Random thoughts and questions

    1. Every individual metabolizes each medicine differently. What might help me might not help you with the fatigue.

    2. Not that I'm aware of, but someone else may weigh in on this one. Check with your doctor before beginning any new supplements.

    3. That feeling isn't uncommon. Have they done a holter on you? It might pick this up and explain just what it is. A 30 day event monitor might be in order.

    4. Drugs may help prevent sudden death but your best insurance would be an implanted cardiodefibrillator. Ask your doctor if you have enough of the risk factors to warrant getting one.

    5. Dont' over exert yourself. Don't run track, play basketball, and lift weights. Know your body. Know what your triggers are. Talk to your doctor.

    Hope this helps.

    Reenie
    Reenie

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

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    • #3
      Re: Random thoughts and questions

      septal measurements can vary somewhat depending on where and how they measure and the echo machine. i wouldn't worry about it unless it is a big jump and it is confirmed.

      CoQ10 is supposed to help a lot as beta-blockers can deplete it--for fatique, overall well-being, etc.

      Reenie's advice is all spot-on.

      s

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      • #4
        Re: Random thoughts and questions

        Hi,

        I've had some strange things happen while napping/sleeping as well. Sometimes my whole body just spasms suddenly, which i can only describe as feeling like i've just been given an electrical shock. I don't know if it's related to HCM, but it freaks me out every time. Happens a dozen or so times a week.

        I've been taking CoQ10 for some time and i swear by it. I think it's helped me quite a bit in counteracting the effects of beta-blockers and fatigue. But not everyone has reported the same results.

        Jim
        "Some days you're the dog... some days you're the hydrant."

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