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Grecoeuro Find out more about Grecoeuro
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  • Chest Pain / Symptoms / Relief

    I was having chest pain to since January. I figured it may have been related to my rib-disc injury. I went to the doctor - specialist - hospital were they found that I have HCM. I am 26 living in Vancouver Canada. my septum is about 31 mm think. Still learning about HCM. The doctors here said that the chest pain is due to the lack of oxygen that the blood vessels in the thickened septum. Is this correct?

    Usually it is more noticeable after a long day or the day after a long day with much movement. Are these symptoms serious?

    The cardiologist prescribed. Metaprolol 25 mg 2 x per day? Anyone ever taken this medication?

    I also went to my naturopath. He gave me a detox cleanser for my blood that gets rid of metals in the body as well as Unda # & 25 which are vitamin drops for the heart and cardiovascular system. I also drank for a bottle of Noni Juice, my father takes a similar product called Goji Juice for his cholesterol. I do feel better since taking these. Anyone else ever seen a naturopath for relief of symptoms?
    26 years old, diagnosed April 2005. ICD July 2005.

  • #2
    I've never taken any naturopath items for anything so I can't answer about thaqt but do coordinate everything you take with your cardiologist. The metropolol is a good start but if it isn't taking care of your symptoms you might need more or a different medicine. Did your doctor talk to you about the possibility of getting an implanted cardiodefibrillator? With a septum at over 3cm you have one risk factor and may have others. The other major factors are history of fainting, poor blood pressure response to exercise, history of ventricular tachycardia, and family history of members dying a sudden cardiac death under age 50. There is a specialist in Toronto, but I'm not aware of any others in Canada. If you haven't already done so, I suggest you call Lisa Salberg, her phone number is at the bottom of this page, and talk with her. She is very approachable and knows a LOT about HCM.

    Reenie
    Reenie

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

    Comment


    • #3
      Thanks for the reply reenie. I am on the "waiting list to be called for an ID" as my mother passed away at the age of 29 in 1983. So I guess I am at risk of sudden death?

      Hopefully the doctors will have time to recognize my symptoms worsening and take the appropriate actions in time to make sure that I make it. I am feeling much better today. I think I did allot of exercise 2 days ago and only got 4 hours of sleep that's why I wasn't feeling to well yesterday. Even the metaprolol is annoying. I'll go see my Cardiologist if it worsens.

      I hate medicine but I will take what is recommended. I have 6 business to run and I think it kind of slows me down in my thinking and makes me spacey sometimes.

      Oh well what can you do? Think positive!!!
      26 years old, diagnosed April 2005. ICD July 2005.

      Comment


      • #4
        It sounds like you're a very busy person! From what you've said you have at least 2 of the 5 major risks for sudden death. You definitely need to be talking to an EP about whether or not you need an ICD. In some ways they're a pain but in others they're truly lifesavers. Just today I spoke with a man who has had his for 5 years and it's shocked him twice now. He's glad he has it!

        Reenie
        Reenie

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

        Comment


        • #5
          Hi Reenie,

          Thanks for the reply. I am on the waiting list for an ICD. My cardiologist said he will monitor me and see me around once per year. I guess he is not to worried about me at this point. Do you recommend that I see an HCM specialist?


          T
          26 years old, diagnosed April 2005. ICD July 2005.

          Comment


          • #6
            I am giving a seminar on Friday on the relationship between stress and ecosystem stability and function. Just 30 minutes ago I read something that your post strikingly reminded me of. One article I read said that whenever we talk about stress in ecosystems we must not forget about "Surprise." What the author was referring to was the fact that events that occur more frequently than the frequency of our observations often lead to what appears to be surprises in the ecosystem. He gave the example of a researcher who is studying fire in an forest. If the forest is observed monthly, the researcher may return some month to discover that the forest has burned and all that is left are ashes.

            So, what does this have to do with this post? It seems obvious to me that sudden death fits this definition of surprise. If you are being observed annually, if seems highly unlikely that any sudden death episode that you experience will occur during your checkup. From the way I read your posts, if you have a sudden death episode in between checkups, the cardiologist will be surprised, but he should not be.

            My question then is, "Do you need an ICD?" If so, and I suspect that everyone here thinks that your risk factors sound more than sufficient, what is the wait about? If not, why is he pretending to monitor you? Annual monitoring for risk of sudden death is sure to lead to "surprises" in my opinion!

            So yeah, don't wait for a surprise. Get in to see a specialist if at all possible.

            Rhoda

            Comment


            • #7
              Hi 'Grecoeuro' (don't know your name, sorry).

              I can very much relate to your story. I was 26 when I was diagnosed while I was living in Seattle. I was having chest pain, which is why I was diagnosed. Like you, my septum was big at around 30mm.

              I think you are very wise to get an ICD. I don't mean to scare you, but the fact that your mom passed away suddenly ((from HCM?) and that you have a 31 mm septum, means you are definately at risk for sudden death. Whether this is a small risk or great risk I don't know. But I hope you can be comforted by the fact that there are numerous people on this Board who are in the same situation and live good, long and healthy lives.

              I am now 35 and lived with some minor symptomss until this March when I elected to have an open heart procedure called a myectomy. It has completely got rid of my chest pain and, the doctors tell me, has also reduced the risk of sudden death. I don't have an ICD, but I have thought about it due to the size of my septum.

              Yes, its probably a good idea that you are taking a beta blocker. This should control your symotoms. I took Atenolol for a few years before my surgery. There are a few side effects (like getting a bit tired and spacey), but you get used to them.

              Take care and don't be afraid to ask questions on the Board. There are lots of great, caring people here - they will be more than happy to give you advice and support.

              Paul
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment


              • #8
                Originally posted by Grecoeuro
                Hi Reenie,

                Do you recommend that I see an HCM specialist?


                T
                I do think you should see an HCM specialist. You have significant family history and a very thick septum. Most cardiologists don't know enough about HCM to be very efficient at monitoring and treating it. They just don't handle enough cases of HCM. On the other hand, the specialists see people with HCM daily and can tell you much more about your condition, your risks, and help you find a treatment plan that suits your needs best. Most people consult with specialists then coordinate the plans with their local cardios. Dr Wigle is in Toronto, but I'm not aware of any others in Canada. If your health care plan allows you can always be seen in the US also. Have you had time to call Lisa yet?

                Reenie
                Reenie

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

                Comment


                • #9
                  Hello,

                  Thanks for the feedback. Currently I am on the wait list for an ICD. At first I was told 4 weeks. Now they say that there are people waiting for one since February. How frustrating. They say they'll call me with a week notice. I guess that it's odd not knowing what's in store for me and how this will progress. I will ask to Cardiologist to see a specialist. I had many tests done and I show know obstruction and possibly some at a very high heart beat. Hmmm. It's good to know though that most people live long lives and that there are so many advanced treatments available. I can tell that HCMers are some of the strongest, caring people around.

                  Thanks for your replies.



                  Theo
                  26 years old, diagnosed April 2005. ICD July 2005.

                  Comment


                  • #10
                    Hi, Theo:

                    I have to agree with those who are suggesting a visit to Dr. Wigle in Toronto. We have a wonderful cardiologist locally who was approaching my daughter's treatment in much the same way as yours is, and her septum was slightly larger than yours. When we were seen by the specialists in Toronto she was immediately prescribed atenolol and within six weeks had a defibrillator implanted.
                    You need faster results than you are getting in Vancouver. Ask for a referral to Dr. Wigle. There is no cardiologist in Canada who knows more about HCM than he does.

                    Just my two cents worth.

                    Abby

                    Comment


                    • #11
                      Thanks for the feedback.

                      I stopped by my family doctor today out of convenience because my Cardiologist seems to get annoyed every time I call him, to ask about seeing a HCM Specialist and about any better drugs. I asked her about anatolol and she said that is just another brand name of beta blockers of what I am taking. She suggested I call my Cardiologist. That's all for now.

                      Thanks for the info.

                      Theo
                      26 years old, diagnosed April 2005. ICD July 2005.

                      Comment

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