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Desperate Down Under

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  • Desperate Down Under

    Hi everyone,


    This is my first posting to the website even though I regularly read your messages. You are all so supportive of each other it is great!. My wife and I moved to Australia in 1999 from Seattle. We are both 34 and have a baby due mid year: he/she will be born an Aussie!

    Anyway, like many of you I am struggling with HOCM. Even though I have severe septal hypertrophy and a high resting gradient, I have remained relatively well since being diagnosed in 1996 when I was 26: I get the odd pressure gradient sensation (tightness in the chest), but my symptoms are manageable and I still go surfing and occassionally work in Indonesia.

    For the past month or so, I have been feeling extremely ill, but not because of the usual symptoms (ie. chest pain, pressure gradient etc.): Rather, I have a chronic headache and extreme tightness in the head. I also feel confused, dizzy and weak - even when at rest. In short, it seems as though my blood pressure is unstable, but everytime I get it checked, it is within normal range. My cardiologist here (who also does ablations) cannot tell me what is going on - we've tried lowering my atenolol and starting me on diltiazem, but I am still out of it. I am also in touch with one of Australia's top HOCM specialists in Sydney, but still no answer. I wish I was back in the States to get expert one on one help.

    Have any of you experienced these kinds of symptoms? They are making my life enbearable.

    Many thanks,

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

  • #2
    Re: Desperate Down Under

    Hi Paul. Sorry to hear that you are having so many problems. I don't have any answers for you. Hopefully someone here will post to help. Until then, you might want to ask the doctor for a CT scan or MRI *if you don't have an ICD* to see if they can pinpoint the trouble? Just a thought.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Desperate Down Under

      paul

      i feel like that sometimes. you may just be under a lot more stress than usual and stress can hit us HCMers a lot harder than others since we are working with a full engine, so to speak.

      i would try meditating to see if you can clear your head. makes a world of difference for me.

      good luck,

      s

      Comment


      • #4
        Re: Desperate Down Under

        I am with Reenie here. I think you should see a neurologist. Your symptoms don't seem heart related to me. I had a brain tumor myself, and my HCM had nothing to do with it.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          Re: Desperate Down Under

          Your problems may be due to the gradient and lack of proper blood flow in your body.
          What is the gradient? I woud suggest making plans to head back to the USA and see an HCM specialist for a complete evaluation. I would suggest a center that can provide BOTH ablations and myectomy options to you.

          If you have any further questions please let me know.

          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: Desperate Down Under

            >>I would suggest a center that can provide BOTH ablations and myectomy options to you.

            Lisa, are you more hopeful about the alcohol ablation process on younger patients? Just curious if any new info has come out since Paul is only 34.

            Bala

            Comment


            • #7
              Re: Desperate Down Under

              i think lisa posted only a few weeks ago that ablations on those under 50 are still not encouraged due to the lack of long term studies. most under 50 are hardy enough to withstand surgery, which is the most proven option so far.

              s

              Comment


              • #8
                Re: Desperate Down Under

                I do not feel very comfortable with ablations in those under 50 - however there are always exceptions to the rules. This is why I suggest a center that offers BOTH procedures.

                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


                • #9
                  Re: Desperate Down Under

                  Hi everyone,

                  Thanks for your messages. My peak resting gradient at last echo was around 86 mm hg. I also have a whopper of a septum: between 29 -32mm, though I had an echo done two days ago and the technician claimed that the way he measures it (which doesn't include the whole septum just the LV part) it was around 23mm. I also have SAM.

                  I'm really not sure why I am having serious headaches and tightness in the head - I've never had this before. I'm also a bit confused at times, like I'm not sure what I'm doing or saying. Lisa thinks maybe I'm not getting enough blood around my body. I'm also concerned that something else is going on or has happened, so I might insist on an MRI like Reenie and others suggests when I see the my cardiologist tomorrow.

                  I've already started down the ablation path. My cardiologist and his collegues at Monash University hospital in Melbourne have done 23, with no deaths, 2 on permanent pacemaker and no 'failures'. With 23, they are the most 'experienced' centre doing ablations in Australia. They don't do myectomies here or I would have one. Anyway, at least on the basis of my recent echo, I am a candidate for an ablation, but I'll have to undergo an agiogram to see for sure.

                  Any more ideas about the headaches?

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

                  Comment


                  • #10
                    Re: Desperate Down Under

                    Paul, when you say confused state do you have any trouble speaking coherantly at that time? Do you muddle sentances like jumbling words around? Blurred vision?

                    It could be as Lisa says, lack of oxygen going to brain. I would talk to the cardiologist. Also a neurologist - it could just be migraines since the symptoms are similar. In any case a neurologist is the best person to figure this out.

                    Take care.

                    Comment


                    • #11
                      Re: Desperate Down Under

                      Hi Bala,

                      Thanks for the message. Yes, I feel like I'm getting lost in mid-sentence. Or if I turn my head suddenly I get a bit dizzy. This has been going on for weeks now - pretty much all day every day. Maybe I should get my O2 saturations checked?? I'm not even getting any chest pain or pressure gradient discomfort; just disorientation and headache. I've read in the literature that some people with HCM have abnormal BP responses even during daily activities. But I've never had these symptoms before?? Maybe they will just eventually go away...

                      Best wishes,

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

                      Comment


                      • #12
                        Re: Desperate Down Under

                        Paul - I strongly recommend that you see a neurologist. Even though you have HCM, that doesn't mean that you are precluded from having another condition. Vertigo is generally caused by an inner ear problem - not HCM. I think you should focus on your whole body...not just your heart.

                        I also had the symptom you describe of turning my head suddenly and getting dizzy or vertigo. As I mentioned, it turned out I had a benign tumor in my ear canal pushing on my brain stem. I had it out, and that was that. A neurologist would help you rule something like this out.
                        Daughter of Father with HCM
                        Diagnosed with HCM 1999.
                        Full term pregnancy - Son born 11/01
                        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                        Comment


                        • #13
                          Re: Desperate Down Under

                          Paul, I have had one similar major episode (confusion, incoherence, headache) couple of weeks back. My specialist suggested the following three steps:
                          1) Asprin a day until this issue is figured out (in case its caused by mini-strokes)
                          2) Holter test again for possible arrythmia
                          3) An appt with neurologist (and I had my head/neck MRI today)

                          I did have blurring in the right eye and the neurologist thinks that is very typical of migraine- its called aura. Now its possible that the migraine is caused by HOCM.

                          Comment


                          • #14
                            Re: Desperate Down Under

                            I don't think my cardiologist in Melbourne will be of much help with this (I've only been to him once before). I've just talked to him on the phone and he doesn't seem particularly interested - said I should see my GP for 'headaches' etc. I don't think he was really listening to what I was saying. Looks like I'll have to head up to Sydney next month to get a full workup at the HOCM clinic at the Royal Prince Albert hospital. However, I should probably still go to a neurologist in the meantime.

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

                            Comment


                            • #15
                              Re: Desperate Down Under

                              Id have to agree and suggest everythign taht Bala has posted,the best info u can get is from someone with experience, and personal knowledge of the symptoms.

                              take care

                              Patrick Von Mende

                              Comment

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