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Here's a question. Symptoms in phases or steady?


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  • Here's a question. Symptoms in phases or steady?

    I've noticed that my symptoms seem to be in phases. Sometimes I'm great, no funny heart beats, SOB is not so bad, & sometimes they are worse. Does any one else have this or are youre smptoms allways there. Just wondering. Thank you.
    \"When I\'m gone and people think of me... I want them to smile and laugh.\" Jason Caldwell

  • #2


    as most things with HCM, it all depends. My atrial fibrillation is a symptom of HCM and I'm now in it all the time. However, most symptoms do go in waves, have catalysts, but some maybe low-level constant all the time. And it can change. Makes it very important to listen to your body and understand your symptom triggers, if any.

    take care,



    • #3
      I seem to go in cycles too. If I ever sat down to chart the severity of symptoms, I think It would look like a roller coaster - some stretches much better than others. Mostly better when everything is optomized i.e. rest, diet, moderate exercise, and low stress. Its frustrating for me and often people don't understand how you can feel and act somewhat normal and other times feel/act so debilitated.
      Chuck B

      An inch is a cinch, a yard is hard


      • #4
        Thanks for bringing this subject up. The responses to your question answered it for me to! My symptoms come and go as well and I'm learning to take note of what's going on in my life. Thanks again.

        Your fellow newbie at HCM.


        • #5

          I can totally relate. I have had times when I was having PVC's virtually all the time for weeks. Then I have had times when my heart was steady as a rock for weeks! Thankfully since getting my PCD implant, my SOB and angina have decreased by about 80%!
          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness


          • #6
            I'm glad this topic was brought up as well. Two years ago at 37yo, i had an echo and was told i didn't have HCM. Then at 39yo, i was told my septal meaurement had increased 50% and definitely had HCM. Is it actually possible that all this growth just happened in the last two years, or was the echo just incorrectly done two years ago?

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


            • #7

              Well, 50% thicker being what? If you were at 1.3 before and now you are at 1.8, then it might not have been a bad echo, but a bad call-- 1.2s and 1.3s being considered borderline by some and sometimes ignored or not seen or whatever.

              Do you have both echo reports? Do you have the TAPE of the echo?

              I don't think it is unheard of to jump that much in 2 years, but certainly not typical.

              Need more info to really answer your question.

              how are you feeling?



              • #8
                I defnitely have good days and bad days but I dont seem to have a run on good days. LOL And I have definitely become much more symptomatic. I am having alot of funny heart beats daily. But I think I will write about it in a separate topic.


                • #9
                  Well i'm glad i'm not the only one on the roller coaster. Sara is there a guide on all these abrivations and some of those big words (catalist) that we use. Sometimes there over my head. Thank you to all who have replied.
                  \"When I\'m gone and people think of me... I want them to smile and laugh.\" Jason Caldwell


                  • #10
                    YOu have defined the largest problem with HCM! WE all have this issue to a degree..some more then others... I have lived this way since I was 12 years old. Somedays I can do ANYTHING, walk, run, stay up late and get up early with NO problem... then the OTHER days walking from room to room in my home is a problem FORGET a flight of stairs and I must sleep a great deal. I never know when it is going to hit although I do know that if I am very active for 3-5 days in a row...I will be down for 2-3 days so I try to balance my work load (and play load!) to every other day and I normally balance off just fine.

                    Why do I call this the largest problem with HCM.... When someone feels poorly for a few days...they make a dr's appointment...by the time they get to the dr they are feeling fine! So the doctor misses his chance to see you at your "worst". Therefore treatment is tailored to your good days not your bad days. That is why I tell people it can take up to 2 years to get a treatment program the is right for them... you have to go through a few cycles and work WITH your doctor to best treat the WHOLE you ...good days and bad.

                    It takes time, good communication and an understanding of your condition to get the best care...and it is worth the work!

                    Best to all...and wishing you many more good days than bad .
                    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)


                    • #11
                      I also have phases where I have no PVCs, no Afib, just a normal sinus rhythm and I feel great. Then there are days where I may have 1 - 2 slight irregularities. Then there are days where I have PVCs pretty much constantly. Then I go back to great for days or weeks. Then sometimes I go right into Afib (5 times in the last year).

                      And I have never been able to find any common thread to link what I am doing/eating to when I have bad days.


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