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What to Expect Is the Question

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Bucky Engineer by Education, Self Professed Expert in Nothing Find out more about Bucky
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  • What to Expect Is the Question

    This kind of picks up from my other recent thread on "is there any evidence that meds can stop or even regress HCM.

    My question to all of you is how do you know when the meds are working. My prime symptoms are 1) SOB on low level exertion such as climbing stairs or mowing my lawn, and 2) Dizziness on standing.

    It sounds as if some of you actually get relief from your symptoms in addition to resting your heart by slowing it up.

    When I take the drugs (at least the ones I've tried) I may get some heart relaxation (can't tell), but I don't get any symptom relief....in fact I get dizzier and more SOB.

    It has been suggested that perhaps I haven't gone through the three month probationary (and I used that word on purpose) period and at the end of 3 months of taking the meds, the symptoms start to lessen. Is that true or isn't it for you guys. Am I actually to expect some symptom relief from taking these things or am I to expect a relaxation of my heart muscle but the symptoms remain the same. (In other words, I may be prolonging my heart's longevity, but as far a symptom relief - I'm SOL). Just curious.....I read so many good things here I was kind of hoping I'd take the meds, my heart would get a deserved rest and my SOB and Dizziness would let up a little. I was not expecting a free pass or cure, just a bit of a holiday from the worst part of the symptoms.

    As you can tell I am starting to get a bit frustrated by the "med" thing. Certainly not taking the meds is an option, but I don't trust that line of thinking....it just makes sense that if your heart works less hard it should last longer.

    I still recall one forum member who basically said "forget the meds they make me feel too bad , "I'll take quality of life over quantity, she said".

    How about the rest of you....you take the meds and glorious things happen????? Yes..... Or you take them and basically maintain where you were? Or you take them and feel even crappier but hang on......


    Hope this all makes sense.


    Bucky
    Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

  • #2
    Re: What to Expect Is the Question

    If I don't take meds, I get chest pain. The meds relieve the chest pain. They do actually cause a little SOB on exercise I think (I am on a pretty high dose of beta blocker), but the drug I take now (Toprol) is alot better with this than the atenolol I used to take. If I went without drugs, there is no question that I would feel worse.
    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.

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    • #3
      Re: What to Expect Is the Question

      Thanks Cynthia.......
      Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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      • #4
        Re: What to Expect Is the Question

        Before my doctor noticed my heart murmur, I was aware that my heart was pounding really hard. I tried to ignore it, since it never occurred to me consciously that there could actually be something wrong with my heart (and when my Dr told me I had a murmur, I argued with her . . . go figure). Anyway, they put me on beta blockers, and I've been on a high dose of them for years now. Since starting, I've never had that experience of my heart pounding. And I don't think I've missed a single dose of toprol.

        Light-headedness? At times, yes, especially from orthostatic hypotension. Certainly much less since my myectomy (and going off ACE inhibitors). And certainly less if I stay well hydrated.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: What to Expect Is the Question

          Actually, I also used to feel my heart pounding quite a bit, and I don't anymore. I suspect that without the meds, it would pound again. I also used to be able to see my pulse due to the force with which my heart beat. Not anymore.
          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


          • #6
            Re: What to Expect Is the Question

            Have a good weekend Gordon..and thanks....Question...did you have Orthostatic Hypotension before you started taking meds, or only as a result of the meds.
            Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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            • #7
              Re: What to Expect Is the Question

              Good question. That's looking back into the dark ages, but I think my orthostatic hypotension started after I started taking blood pressure meds. But . . . I'm still taking them (but different drugs), and now I only have that problem every so often.

              Gordon
              Myectomy on Feb. 5, 2007.

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              • #8
                Re: What to Expect Is the Question

                Bucky,

                You sound so much like me in your symptoms, that I wish I could spend a few days with you and your family, just to help you understand what's happening. You sound frustrated, confused, a little bit scared, and like you've have it with the medical system!

                Lightheadedness, as Gordon said, is very likely from orthostatic hypotension, which worsens with the meds due to their lowering of BP. However, lightheadedness is not to be taken lightly with HCM patients - have you seen an EP cardiologist? I think, and this is only my opinion, that you know sooner than 3 mos that the meds are not working.

                I've been on and off this site so much due to hospitalizations and spending my summer time in Gettysburg, that I don't know a lot of your history. Have you seen one of the HCM specialists? How many Holters have you had done? Have you ever had an EP study?

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                • #9
                  Re: What to Expect Is the Question

                  HI Isis:

                  Thanks for your response.....I sent your a private message. Let me know if we can hook up and discuss the great world of HCM.

                  bucky
                  Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

                  Comment


                  • #10
                    Re: What to Expect Is the Question

                    Hi Bucky!
                    I have been taking meds for about 25 yrs. now, some better than others. I used to take Inderol in the beginning to slow my heart rate, it did calm my heart rate and I never felt any symptoms while I was on it, maybe a little more sleepy/drowsy in beginning as my body adjusted to it. It was when I got off of it that I had problems. I was jittery and shaky and felt like my body "needed" it. That lasted until the drug was completely out of my system. I felt like an addict, it was not pleasant. Verapamil made me feel the difference immediately. I felt better and no side effects for me. I take a low dose of that and Toprol which in the beginning felt like a wonder drug. I felt so much better, could do more and less sob. Now after so many years of that it's hard to know the difference whether it's working as well or not. I am so used to feeling a certain way and over time changes can happen that are slight that I get used to it. It's not until I get on a new drug that I can tell the difference and right now the drs. are not perscribing anything new for me. It's been hard for me to adjust to this disease, but over time I have. I do better than some people, and worse than others. I fought it for a long time but it continued to run it's course whether I fought it or not. Now, by finding you guys I'm able to participate and not fight so much.

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                    • #11
                      Re: What to Expect Is the Question

                      Doug - Sorry to hear this is continuing to bother you. Wouldn't it be nice if there was some lightbulb that went off & you can tell the difference like night & day??!! Gosh I'd love that.
                      I've lowered my atenolol & now take verapamil. I'm not 100% sure it better & the difference is so little, so I've just accepted it. I'm hoping the lower dose of BB may help with the weight gain issue and the water retention. I swear there are days I feel like Hoover Dam.

                      At least I dont "gray out" as much. . .
                      Marc
                      Diagnosed @ 48
                      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                      AICD - Valentines Day '08, Spark Plug replaced 11/14
                      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                      Quietly going insane . . .

                      Comment


                      • #12
                        Re: What to Expect Is the Question

                        Hi Marc:

                        Well the Acebutolol seems to be OK....I am not as dizzy as I was with the other drugs...so I'll hang in there with it. Yes this med thing is very frustrating to all of us. YOu never really know what to expect and pretty soon you loose touch with what was normal before any of the symptoms showed up.

                        Maybe I should just start rating the days...today was about a 6 on a scale of 10. Not bad all things considered.

                        Take care and I look forward to seeing you on my next trip to LA.

                        Doug
                        Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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