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How to describe symptoms accurately and clearly

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  • How to describe symptoms accurately and clearly

    Given how long I've lived with this, I can't believe I'm going to ask this question, but here goes...

    What's the difference between the ordinary, run-of-the-mill palpitations that go with HCM and intermittent AF?

    I'm trying to get a handle on this because I don't think I've been accurately describing how I feel when I'm asked at the doctor's office. This is especially important considering how little face time I get.

    -- Tim
    Life is a banquet...and I got botulism! -- Me

    If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

  • #2
    Tim,

    I think that would be a great discussion to have actually, both for the newly diagnosed and the more experienced HCM'ers as well. I can't tell you how long I experienced certain symptoms before I even knew what the name of it was or could describe it accurately to my doctors.

    PAC's, PVC's, A-Fib, palpitations... who knew?

    It would be great if this thread culminated in a real-world glossary of symptoms, their proper names, and what they feel like to the average HCM'er. Maybe then we can more accurately put a name to what we are experiencing and I can stop looking like such a blathering idiot in front of my docs. (Well, that last one might actually be unavoidable).

    Is this what you had in mind, Tim... or did I just hijack your thread? LoL.

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Something I did and still do is write down when you feel something unusual. The time, how it feels, I used to say it felt like my heart was turning over. PVC's can give you the skip a beat feeling. My Dr's were pretty much able to tell just by my writing them at the time. I find it easier to do that because by the time I see the Dr. I would say it just feels weird. We do all have to be our own advocates. We know how we feel so it is good to have the best description possible. Tim, don't think you should know all that just because you are a long time HCM person. It seems like with all of you just never know what new can develop and you need to find out if it is related to your HCM. Better safe than sorry.
      Midge

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.

      Comment


      • #4
        Hey Tim, If your not getting the face to face time you feel you need, you should say something!!! (Remember the Dr. is there for you, and basically works for you, not the other way around) Another thing I do is write ?'s down as they come to me so when the face to face happens, I don't space anything off.

        As far as A-fib and PVC's go....well I don't think I've ever been in A-fib. But I do from time to time have "runs" of 4 or 5 PVC's in a row at a time.(that I can feel) From what little I know, A-fib it's a MUCH longer "run" than that. But I can ask some paramedic friends if you would like??

        Hope this Helps & Be Safe,

        Troy
        Every new beginning, comes from some other new beginnings end.

        Comment


        • #5
          Take your pulse by putting the first two fingers of one hand on the inside wrist of the other hand and press lightly.

          Afib is easy to feel as the beats are random and will stay random for a little while, from minutes to hours.

          Palpitations are typically fleeting or intermittant. You may have a short run of something, but that should only last a minute or less. Even PVCs are usually regular, even though they are "wrong" as opposed to the irregularity of afib.

          Whenever I went into afib, it literally felt like my heart turned over whereas all other stuff was just flittery feeling.

          Comment


          • #6
            Originally posted by mtlieb
            Is this what you had in mind, Tim... or did I just hijack your thread? LoL.
            Nope, that's exactly what I was getting at.

            I can tell when I've gone into AF in toto; that's easy enough to identify. However, it's been made known to me that at some point, I most certainly went into AF and didn't know it. I am guessing that what I once thought were palpitations were really brief bursts of AF. So, when I would see my doctor back in California, I told him I was having palpitations.

            What's bringing this on now is that for the past several days I've been having these brief instances of...something. I won't label them because I don't know what to call them now. It goes something like:

            thumpTHUMP...thumpTHUMP ... ... ... THUMPTHUMPTHUMP...thumpTHUMP

            This is nothing new for me, but after not having it for several months, I am a bit concerned about it and should probably know what to call it before I see Maron and his associates on 6/16.
            Life is a banquet...and I got botulism! -- Me

            If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

            Comment


            • #7
              Originally posted by Midge Rollins
              It seems like with all of you just never know what new can develop and you need to find out if it is related to your HCM. Better safe than sorry.
              That's very true. I guess I am more concerned about being accurate because all too often it seems that doctors take what one says completely at face value and don't dig deeper. For example, if I told my previous doctor I was having palpitations, he would think nothing of it and dismiss it entirely. Like I said to Jim, I think what I had been telling him about were really brief bouts of AF where I converted on my own.

              Given that we're finding more things wrong with my heart beyond HCM, I'm thinking it's very important to describe any symptoms accurately.
              Life is a banquet...and I got botulism! -- Me

              If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

              Comment


              • #8
                Originally posted by Sarah
                Afib is easy to feel as the beats are random and will stay random for a little while, from minutes to hours.
                Oooh yeah. I noticed that back in September when I had my first major experience with AF. When I was in the ER with it a few weeks ago, an EMT student had asked permission to ask me some questions and do some examinations, and he was amazed over an AF pulse.

                Palpitations are typically fleeting or intermittant. You may have a short run of something, but that should only last a minute or less. Even PVCs are usually regular, even though they are "wrong" as opposed to the irregularity of afib.
                But isn't it possible to have a second or two of AF and then spontaneously convert? I can't figure out how else I would have had a clot back in November '03.

                Whenever I went into afib, it literally felt like my heart turned over whereas all other stuff was just flittery feeling.
                For me, it's like a fast thudding in my chest, and my pulse is erratic. It doesn't match the thudding sensations.
                Life is a banquet...and I got botulism! -- Me

                If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                Comment


                • #9
                  Hi Tim,
                  I had several episodes of less then a minute A-fib recoded on my devise. I was not aware of them and my Ep says they happened in the night.

                  Pam
                  Dx @ 47 with HOCM & HF:11/00
                  Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                  Lead failure,replaced 12/06.
                  SF lead recall:07,extracted leads and new device 2012
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                  Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                  Genetic mutation 4/09, mother(d), brother, son, gene+
                  Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                  Comment


                  • #10
                    Originally posted by Pam Alexson
                    Hi Tim,
                    I had several episodes of less then a minute A-fib recoded on my devise. I was not aware of them and my Ep says they happened in the night.

                    Pam
                    Hi Pam:

                    Do you have an implantable ECG? Dr. Maron is talking about putting one in me. I will know more later this month (6/16) about that.
                    Life is a banquet...and I got botulism! -- Me

                    If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                    Comment


                    • #11
                      Not that I am aware of!!! But my AICD does record the A-fib. and any arrythmias and when they occurred.
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                      Comment


                      • #12
                        I always have a difficult time describing symptoms. I am pretty sure something more is going on that just palpitations. Some days the "palpitations" have actually kept me in bed. During these times, my heart feels weak and irregular. Skipped beats, flutters, and the sensation that your heart is actually flipping over. I heard someone describe similar feelings as a fish flopping around in their chest-man do I know that feeling.

                        Yet never has anything been 'caught', so nothing is done. I have thought about an implantable ECG but its never been mentioned to me by a Dr.

                        I completely understand the frustration. Take care
                        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


                        • #13
                          I really like this idea, of accurately describing symptoms. Maybe, we could pick a symptom a week & everyone add their sense of what it feels like & then maybe we could put a "label" on it.
                          I've experienced so many different type of "palpatations" I had Afib in the Hosp & Cardio's office, so that confirmed what I had felt many times (I have pain & nausea while in Afib). Sometimes I feel what my Dr has called Atrial Flutters (lasts a short time), I experience this most am upon awakening. I've also gone into VTech (in hosp), but I'm unsure how to identify this again. Sometimes, it feels as if my Heart is just bouncing along & then someone catches it (like a ball) & holds it for a minute-what's this?
                          I try to take my BP, when I feel differently, as my digital readout also gives my pulse. My Cardio said Afib is a heartrate over 100 (I've gone up to 200), but what if my heart is "racing" & my pulse is only 90?
                          If I'm sleeping & awakened abruptly (phone rings etc)- my Heart goes into total chaos, for about 5 minutes.

                          Maybe next week's topic could be other "weird" sensations- Heart related.
                          RONNIE

                          Comment


                          • #14
                            I've read some things in this thread that interest me a great deal... for instance Ronnie you said that your a-fib is accompanied by pain and nausea. Is this a normal symptom for those in a-fib?

                            I had some problems this spring, that still continue somewhat, with periods of dizziness, nausea and chest pain that are accompanied by a fluttering in my chest. It's not actually like the butterflies everyone describes... it's more like a rapid muscle spasm of the heart... like when your eyelid gets to twitching or a muscle in your arm. I've only actually passed out once, but there are days when I feel like I'm going to hit the ground at any moment... and that feeling usually lasts for hours and even days sometimes. During these little spells I find myself absolutely exhausted for seemingly no reason.

                            My local cardio says it's not a-fib because it wasn't caught on my EKG or Holter... but heck an EKG is only about 30 seconds and the Holter was less than a day. I do trust my local cardio, but I'm not sure how anyone can say i'm not experiencing bouts of a-fib based just on that. I also know that following a myectomy there's an increased risk of a-fib, so it wouldn't be unusual for me to get it.

                            Jim
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #15
                              Jim, I'd ask if you can wear a loop monitor for a month. Maybe then you can catch some of these "things" and figure out what they are.

                              Reenie
                              Reenie

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

                              Comment

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