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TrappedIllusion Find out more about TrappedIllusion
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  • Hi Everyone

    Hi everyone,

    I'm so glad I came across this website/forum - there is so much great information and personal experiences that cannot be found in any book or from any doctor. I've been looking through the posts - some of which I can relate to.

    I'm 21 years old and I was diagnosed with HCM when I was 16. I've always been on only one medication for HCM at a time, but I've went through quite a few drugs, either because of side effects or continuing symptoms. I started off with verapamil, then diltiazem, then atenolol, inderal, bisoprolol, metoprolol, and right now I'm back on bisoprolol 2.5mg od.

    I have variable symptoms. Some days are good, and others not so good. I get palpitations once in awhile and shortness of breath when climbing stairs. My main combination of symptoms is left arm/wrist pain combined with tachycardia (over 100bpm) and chest heaviness - this is an ongoing problem (occurs every few days). Over time, I've gotten to understand what triggers these episodes - heavy meals, stress, exertion...but sometimes it seems, they occur for no reason at all. I can't lie down when I get these symptoms b/c it just makes everything worse - I usually just sit down and place a ice pack on my wrist/arm/chest. Sometimes I even take 1.25mg of my bisoprolol and find I feel better in about an hour. I've talked to my family physician and my cardiologist about these episodes numerous times, but I never seem to get a definitive answer - maybe it's just inherent of my HCM and nothing can be done about it.

    After reading many posts, I've realized, I don't know much at all about my HCM. I don't know what my "gradient" is...I think I'm obstructed (but not sure), I do have a murmur, and my septal measurement my cardiologist said is "twice that of normal" - 2.2cm seems to ring a bell in my mind.

    After reading some posts, I do have some questions:

    1. Which patients with HCM should get surgery or an ICD. Some more history...my uncle passed away in his mid- thirties (he had HCM) and my blood pressure during my last stress test dropped instead of rising.

    2. Could someone tell me a little bit more about AED's? Do HCM patients have an AED at home? Is this recommended?

    3. Do most people with HCM visit a HCM specialist or a cardiologist? I visit my cardiologist annually.

    4. My cardiologist told me that I should eat lots of salt - I've read prior posts on this but am still not sure why. I realize that many ppl with HCM have low blood pressure and that eating enough salt will normalize their blood pressure; however, I recall one of my cardiologists telling me that the medication I'm taking works by lowering blood pressure so that my heart doesn't have to work as hard to pump blood - so wouldn't it be counterproductive to eat more salt??

    5. I've been taking Coq10 for about 5 years now (basically since I was diagnosed) - I was wondering if most people tell their specialist/cardiologist if they are taking CoQ10 or any other supplement? I have not told my cardiologist/family physician about taking CoQ10 mostly because I'm concerned they may react adversely and tell me to stop taking it (prior experience with a former family physician led to a lecture about how you should never take any natural supplements as they can be dangerous).

    This has gotten to be a very long post. Thanks in advance =)

    TrappedIllusion

  • #2
    Re: Hi Everyone

    Welcome to the HCMA. I have answered your questions below.


    1. Which patients with HCM should get surgery or an ICD. Some more history...my uncle passed away in his mid- thirties (he had HCM) and my blood pressure during my last stress test dropped instead of rising.
    Please see the website http://www.4hcm.org/treatment/index.php and note that the risk factors for needing an ICD include -Family history of sudden death (under the age of 50-55), mass hypertorphy (septal measurement of 3.0 or greater), history of arrythmia (VT or NSVT), adverse Blood pressure responce on stress test (your bp falls when it should rise), or pervious cardiac arrest.

    2. Could someone tell me a little bit more about AED's? Do HCM patients have an AED at home? Is this recommended?
    No it is not recommended to have an AED - if you need an ICD you should have an ICD -if you have an AED and there is nobody with you at the time of your arrest, or if you are sleeping it will do you no good.

    3. Do most people with HCM visit a HCM specialist or a cardiologist? I visit my cardiologist annually.
    Yes, most people today do seek an opinion from a specialist in the field of HCM, they also have a hometown cardiologist.

    4. My cardiologist told me that I should eat lots of salt - I've read prior posts on this but am still not sure why. I realize that many ppl with HCM have low blood pressure and that eating enough salt will normalize their blood pressure; however, I recall one of my cardiologists telling me that the medication I'm taking works by lowering blood pressure so that my heart doesn't have to work as hard to pump blood - so wouldn't it be counterproductive to eat more salt??

    You need to keep your blood volume up. You should not avoid salt, you should include it in your diet. The drugs are not to lower your blood pressure (although they may do this) they are meant to help the heart relax as hearts with HCM have a hard time doing this.

    5. I've been taking Coq10 for about 5 years now (basically since I was diagnosed) - I was wondering if most people tell their specialist/cardiologist if they are taking CoQ10 or any other supplement? I have not told my cardiologist/family physician about taking CoQ10 mostly because I'm concerned they may react adversely and tell me to stop taking it (prior experience with a former family physician led to a lecture about how you should never take any natural supplements as they can be dangerous).

    First of all you should NEVER take a drug, herb or anything and NOT inform your doctor. CoQ10 has not shown any significant value in large populations with HCM. Some people have reported that they feel better while taking it, others feel no difference. However, it is VERY IMPORTANT that you talk to your doctor about this ASAP.

    Regarding your current medication, this is what Medline had to say about its uses:
    Why is this medication prescribed?
    Bisoprolol is used to treat high blood pressure. It works by relaxing your blood vessels so your heart doesn't have to pump as hard.

    This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.
    http://www.nlm.nih.gov/medlineplus/d...93024.html#why

    It is not a drug we see used in HCM very often.

    I think it would be a good idea if you contacted Dr. Wigles office in Toronto, he is the leading expert in Canada in HCM. Your local doctor can give you a referal to him for an evaluation.

    If you have additional questions just let us know.

    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)

    Comment


    • #3
      Re: Hi Everyone

      Wellcome to our little community! This is the place to be for breaking news, information and helpful, supportive friends. Please be in touch with Lisa. She can give you info and direct you to a specialist if you are not already seeing one.

      Peace,

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

      Comment


      • #4
        Re: Hi Everyone

        Thanks for the information and answering my questions. I had an additional question: I reside in Vancouver, BC so I wondering if you know of any HCM specialists in this area? If there aren't any HCM specialists in Vancouver, I'll definitely try to get a referral from my family physican for Dr. Wigles. Thanks again.

        Comment


        • #5
          Re: Hi Everyone

          The most knowledgeable center in Canada would be Toronto - I wold suggest a little trip to see them.

          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)

          Comment

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