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High Voltage!

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  • High Voltage!

    This is my firs post here - as my family tree on my mothers side has now been diagnosed with HCM. I read about on the web site, and it does go a long way to explain some of the weird things I experienced growing up.

    At around age 10, when being tested for allergies, the doctor noticed that I had a slight hart murmur. He didn't think it too big of deal, and said I would probably just grow out of it. So we never pursued the matter further.

    In junior high and high school, I always had a problem with a chest pain during strenuous workouts (usually running). I did see a doctor once, but he just passed it off as excess gas pains...

    After some time in the Air Force, they switched from a 1.5 mile run fitness test (more of a jog) to a crazy bicycle test which measured the difference in hart rate over a period of time (from rest to moderate exercise). I had a hard time passing this, since my heart always beat a bit too fast to start with than "normal", and didn't go up very much (~70 up to 110). I soon figured out how to beat that, by simply exhausting my self before the test, allowing my heart rate to start low (tiered).

    While in the Air Force, I decided to take up flying (private not jets). One of the things the FAA requires is a flight physical, which includes an EKG scan. Up to that point, I had never had an EKG. When tested, the technician thought the machine was malfunctioning and sent it to PML (the AF function that calibrates equipment). A week later, I was tested again. The technician had no idea what to make of the results, as my heart rate and rhythm were ok, but the needles where going crazy (over 4 times the normal amount of movement). In other words, I put out a little more than 4 times the voltage of a "normal" person. He sent the results to the FAA medical people, but I never heard back on that. Being an E3 at the time (poor), and seeing how the airplanes that I was flying were very expensive to run and SLOW, I decided to put my license quest on hold.

    So.. at least some of the strange things that happen to me are now explained. I assume the voltage thing is due to the extra jolt it takes for my heart to move the extra mass of thicken tissue. Has anyone else had this show up on an EKG?

    Bryan

  • #2
    Re: High Voltage!

    Hi Bryan. My husband was in the Air Force when he was diagnosed with HCM too. To answer your question, some people with HCM have odd EKG's and some don't. My hub's looks like he's had a heart attack when he hasn't. Please read through this site, not just the message board, and you will find a lot of info here. We're here for any questions you may have.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: High Voltage!

      Hello Bryan,
      You’re welcome here. An EKG may or may not be a good indicator of HCM. The best test is an echocardiogram – or echo. The doctor can then ‘see’ all about your heart’s condition. If in fact you do have HCM there are a lot of drug therapies which may alleviate the symptoms, or at least reduce their effect. If the drug therapies fail, there are other alternatives to fall back on. If we use our brains and common care most all of us die of old age.

      This condition, I have to tell you, is gene related. So for starters, if members of your blood family have been diagnosed with it, you have a 50 / 50 chance of having it too. When you add in the ‘strange’ EKG readings you’ve had, that 50 / 50 balance appears to be tipping against you, but it’s an echo that will tell the tale for sure.

      I urge you to get an echo, and if you have HCM, try to get a cardiologist who is well founded in the treatment of HCM – many of them are not. Whether you find such a doctor or not, it will be up to you to learn all you can about it, and be active in your treatment. The information at the front of this site should be quite useful to you, along wit the wealth of information in the postings on this board. You can use the search feature to find posting of particular interest to you, or you can scan the titles of the postings for clues as to what they contain. We do ramble at times, so the title alone is not always a key – but you have to start somewhere.

      Good luck, and please let us know how you make out.
      Burt

      Comment


      • #4
        Re: High Voltage!

        Bryan, Welcome to the site. Give Lisa a call at the HCMA office when you are ready. You will be pleased and surprised with the amt of info available. Best wishes, Linda

        Comment


        • #5
          Re: High Voltage!

          HCM - some may say are "supercharged hearts" - the thick muscle gives a BIG push - that energy is measured in your ECG and yes...it appears to be "high voltage".

          Welcome to the club that none of us wanted to join.... but we are sure glad you found us!

          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


          • #6
            Re: High Voltage!

            Thanks everyone... I'm in the process of moving from Florida to Oklahoma (talk about stress). I plan to get an echo (as suggested here) once there to see what is really going on.

            Comment


            • #7
              Re: High Voltage!

              Oddly, when I was 19 I went to the ER with chest pains and racing heart, the Dr did an EKG and just said "Ahh there must be something wrong with the machine, she's too young for that." I had several EKG's after that and everything was normal." To this day have no idea what he saw on that EKG that day.
              The Dr that sent me to my first cardiologist 6 yrs ago said the same thing(that the machine was probably acting up), yet thank goodness she decided to send those results off anyway.

              My mom's EKG always reads that she has had a heart attack(which she hasn't-as far as we know), nor does she have HCM, she did however have Rheumatic fever as a child.
              EKG's are way too confusing for me, I can just imagine the terror in the poor tech's heart when they read some of our EKG's.
              Pam
              It's not what you gather, but what you scatter that tells what kind of life you have lived.

              Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

              Comment


              • #8
                Re: High Voltage!

                Hi Bryan...My mother had what they called years ago IHSS. But not once did her doctors ever suggest that her children be tested. They just treated her with drugs. At age 38 I had problems, shortness of breath, chest pain, racing heart beat. My PCP said I was just out of shape. I knew I wasn't. I went to my mothers Dr. and had some test done. But they told me nothing looked real bad. At age 49, it hit me hard. I was placed in the hospital for 4 days and had tons of tests done on me. It was determined that I had HCM. They put me on Toprol and a baby aspirin each day. they then discussed putting in a pacemaker.

                I then contacted the Cleveland Clinic and had all my test results sent there. They determined surgury was the cure for me. Well it's been 2 1/2 weeks since my septal myectomy. Now i'm sitting home doing my exercises and getting better every day.

                Do not stop with one Drs. opinion. Keep going till you are satisfied.

                Welcome to HCMA.

                Pat Ekardt
                (Tigger1)
                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                Comment


                • #9
                  Re: High Voltage!

                  Hi there! My Dr. in San Antonio is still trying to figure out if I have HCM or not (we are trying to figure it out because my 6 month old daughter has it and we aren't sure why at this point), but I can tell you that my ECG shows that Ive had a heart attack..and Im only 23 years old..lol. He won't give me a formal diagnosis because the other doctors at the University he works at do not agree with his HCM diagnosis, however, I do have a murmur, a thicker than normal septum, left ventricular hypertrophy, and what I call "my heart attack on a piece of paper". (ECG). Either way, he still thinks its "very mild HCM", and he diagnosed me partly due to the abnormal ECG along with the somewhat abnormal echo. So, it looks like I am not the only one with the "heart attack on a piece of paper"....

                  Comment


                  • #10
                    Re: High Voltage!

                    Sounds like your doctor is a heart attack. The things you relate in your post that are found on the echo, enlarged septum, left ventricular hypertrophy, murmur, are all symptoms of HCM. A biopsy would confirm conclusively, but the road map is there. So what next?, wait and see? How did they diagnose your daughter if they can't diagnose you? Let us know how you make out.

                    Comment


                    • #11
                      Re: High Voltage!

                      LOL. Dr. Feldman is actually one of the best adult cardiologists that I have personally gone and seen so far, but I really think that in a University setting, I can see where he cannot give me a formal diagnosis when other doctors in the practice will not agree with him. Either way, the problem is that they said my septum was a 1.3 cm..which is very mild for an HCM'er. I had turbulent bloodflow, but he said the other doctors were arguing with him that it was probably due to me being nervous, which I really was at the time of the echo. The Dr. wants me to go back for a stress test on the treadmill, but he is approx. 5 hours away from me..so we will try to get there before the end of the year is over. Hard to travel with a 6 month old! However, I think he is still standing by his diagnosis, but just cant formally give me the diagnosis until the other doctors at the University agree on it. Our pediatrician actually discovered my daughter's heart murmur, and sent us to a pediatric cardiologist, who confirmed she had HCM. Well, when an infant has HCM, it is VERY rare, at least from what everyone has told me. The pediatric cardiologist in Dallas feels that my daughter has a metabolic disorder causing the disease, while MY cardiologist says "no way, YOU have HCM, and you were just a rare case that your daughter got it as an infant." So, as you can see, emotions are running pretty high over here, but hopefully, it will all be settled soon. Thanks for posting to my message

                      Comment


                      • #12
                        Re: High Voltage!

                        Just for the record, all that you posted points to HCM. You are certainly not the only "heart attack on paper" that I know. My husband, among many others, also falsely looks like he had a heart attack.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Re: High Voltage!

                          Hi Marche,
                          Further to my PM, you’ll find quite a few of us with ‘heart attacks’ based on the ECK/EKG results, but ‘it ain’t necessarily so’. If you read Jim’s (mtlieb) previous postings you’ll see that every time he went to the ER and they did an EKG they informed him that he had a heart attack, and he had to tell them – No, it is because of my HCM that you’re getting that reading.

                          I myself was told that I had a heart attack, but I don’t know yet if it was the (undiagnosed at that time) HCM, or that I actually did have what is called a silent heart attack. Frankly I don’t much care which way it was. That has to have occurred over ten years ago, and I’m here now – and that cardiologist has long since retired anyway.

                          Please keep us posted with upcoming events – and/or just to talk to somebody who cares.
                          Burt

                          Comment


                          • #14
                            Re: High Voltage!

                            Hi! I also have a septal measurement of only 1.3, but I also have a pretty high inducible gradient, involvement of both the mitral and aortic valves, lots of rhythm problems, and am getting a pacemaker and possibly an ICD next month. I have also been told I might need an ablation or myectomy because of the gradient and valve problems. So don't let the small septal size trick you or the doctors into thinking that your problem is mild. It may be, but it may not be.

                            I am very concerned for my sister in the same way. Her docs told her hers was mild, but I think her symptoms indicate otherwise, but as a result I have not been able to get her to a specialist.

                            My experience would say that small septal thickening is not necessarily associated with mild HCM.

                            So, please see a specialist!

                            Rhoda

                            Comment


                            • #15
                              Re: High Voltage!

                              Hi Rhoda!

                              Thanks for the info. My gradient was 65%, which I was told was nothing worrisome..is this the gradient you are referring to? I have mitral valve regurgitation, also, that I forgot to mention. When I was pregnant with Kylee, I had HORRIBLE heart problems, which sent me to the ER once, and the cardiologist a couple of times. However, I was told it was because of the "extra workload on the heart from the extra blood during pregnancy" and that I also had "left ventricular hypertrophy". At one point while I was pregnant for a couple weeks, I couldnt stand up without seeing black spots and feeling dizzy, I would almost pass out from walking a couple feet ahead of me, and I could feel EVERY beat my heart made..and it even seemed like my heart would skip a beat, and it was off rhythm (like bumbum...bum bum bum...bum...bum) It followed no patter. They placed me on a monitor that I used when I felt the palpitations, and the results were abnormal, however, again, they came to the conclusion it was due to the pregnancy. It was all really strange, and I felt horrible those few weeks.

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