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How to describe symptoms accurately and clearly


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  • #16
    I’m not sure where this will go, but I’ll put on my system engineer’s hat (which isn’t as cool as train engineer’s hat) for awhile and spew forth the following thoughts:

    I’ll go out way out on a limb and suggest that everyone is probably different and the way you “feel afib” is going to vary from person to person.

    My theory is that what we feel in terms of palpitations, etc. is really the disturbance of the ventricular rhythm and not the fibrillation of the atria--I really don’t believe we (or at least, I) feel the atrial fibrillation directly. The atria are relatively small and fibrillate so quickly (with very little motion as a result) so that we are unlikely to feel the actual fibrillation. The ventricles, on the other hand, beat very strongly and create the biggest part of our pulse so we’re much more likely to feel something unusual in our ventricular rhythm. (I’m not suggesting we don’t feel the symptoms resulting from the a-fib, such as “sweats”, edema, SOB, etc. I just don’t believe we experience the fibrillation directly.)

    I believe what we feel is caused by the unusual electrical impulses generated in the fibrillating atria affecting the ventricular rhythm (see the overview at http://www.a-fib.com/Overview.htm). The manner in which these impulses are filtered is certainly going to vary with the peculiarities of each HCM heart and be unique (I think) to each individual.

    Not too long ago I was in my cardio’s office getting an EKG when I felt some “good thumps” and saw these get captured on the printout. I inquired about the waveforms on the EKG and he pointed out the high-frequency (relatively speaking) fibrillation, the premature ventricular contractions (PVCs) which caused the thumps, and the little tick marks from the AICD pacing me at 60 beats per minute (resting). I couldn’t really detect the a-fib, but I sure could feel those PVCs!

    Okay, engineering hat is now off, and I’m putting up a basket to catch any rotten fruit thrown my way!

    --Living life on the edge .. of a continent!
    Charter member: Tinman Club


    • #17
      LOL, no rotten fruit here. I'm not sure about not feeling afib. There may be some credence to the thought that you feel the effects of afib, not the actually fibrillation. I've never thougth of it that way before. I hope others join in and help us sort through this.


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


      • #18
        A few inexpert thoughts:
        It is useful to know the vocabulary for different heart reactions/sensations, in order to understand information from doctors, here at HCMA, and in other sources. When talking to my doctors, the vocabulary words may help (atrial fibrillation, PVC, palpitations, etc.) however, I guess I'd rely more on describing the symptom as fully as I can and letting them name it--precisely to be sure I don't call it wrong and they go with what I said. Even what I'm sure is a-fib and has been documented on EKG and called a-fib previously, I think I'm likely to say something like "what I believe is a-fib" when talking with a doctor.

        Midge said write the symptoms down, describing them. I think this is a good idea. The last year I've kept a log book where I've documented when I've had ("what I think is") a-fib: I note date, time, what I was doing, what I think triggers might have been if I know it (was out gardening in sun on 90 degree day before I knew that heat would slam me, dehydration and tiredness, etc.) I note when it started and when it resolved itself. Ways I think of to concretely describe a heart feeling: What is the pulse rate? Is rhythm regular or irregular? If irregular, what is it like? Does heart seem to be beating hard (can feel it, hear it inside ear, see it) Are there other feelings (pain, nausea, stomach upset). I know I've said things to my cardiologist like my heart "flips out" or "goes out of whack", but obviously this more concrete information is more to the point! I was glad I had this log book at hand to help me be specific when I recently went to HCM evaluations at two different medical centers. This may also help me be clearer about what combination of circumstances served as a trigger--so far there always seems to be a clear situation leading up to a-fib, and if possible I try to change so I avoid that trigger in the future.

        When I first had (what I think is) a-fib, for an hour or so a couple times, my cardiologist said he'd sure like to see it when it was doing that---if I was ever near an EKG when it was doing it, get a print out. It was kind of jokingly said, but a few months later when my heart was zinging along about 140 bpm, way faster than ever previously, and totally irregular for over an hour I thought, well he wanted a picture, called my doctor and got permission for an EKG and went to the emergency room (night time) and got it. Guess I was being my own "event monitor". (This was before I had an HCM specialist or even knew there were any...I certainly had never heard of Holter tests or event monitors and the cardiologist never suggested it.)

        A couple general definitions from the HCMA web page "glossary" section are:

        Atrial fibrillation
        A common type of arrhytmia in which the atria lose their normal contraction pattern and the heart rhythm becomes irregular. Atrial fibrillation may be transient or persistent.

        An uncomfortable awareness of the heartbeat or rhythm. Palpitations may be due to normal heartbeats made more prominent by anxiety or exercise, or may in fact be caused by an arrhythmia. The presence of palpitations does not necessarily convey any prognostic significance in HCM, although on occasion (particularly when prolonged) they may be important signs about which you should advise your doctor.

        ‘Nuf said, Lisa Inman


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