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Labbey Heart transplant on September 15, 2008 Find out more about Labbey
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  • feel like falling down

    Hi, just wondering if anyone else gets the sensation that they need to sit or lay down immediately or they are going to fall down?
    I did chat with Lisa about this. Just wondering how common it is for others?

    This happens to me when I am trying to be "normal", you know at the mall or grocery or just trying to do a little walking. I guess I don't really understand it. It has not explained by doctors to me. Is it oxygen?

    Lisa, i am so bad, I remember us talking about this, but my memory is horrible. I blame it on the meds! haha. I remember you said you need to sit or whatever and maybe I get dehydrated. is that right?

    Anyone else feel this way?

    thanks,
    lisa A.
    diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

  • #2
    oh, yeah

    Been there!

    Lots of water is very important for HCMers, too. Have you talked to your doctor? Make sure you aren't having any ventricular tachycardia.

    I just try and sit down for a bit when this happens.

    Take care,

    S

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    • #3
      Most of these issues are related to hymodynamics. Keeping well hydrated is your best defense.

      By the way - if in doubt...SIT down or your body will do it for you!

      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


      • #4
        Falling Down

        Me too, I was put on one of these loop monitors, very easy to use and found I was have very short runs of v tach. Very weirdly after having a test done (electrophysiology) to see if the v tach could get worse, its where the doctors go through a vein and probe the heart electronically to see how risky the rythms can get). After the test, it went away for a year or two. I think the actual test re-synced my heart----you tell a Dr. this and they think your nuts. However, my experience with this and my conclusions have had ended up being more accurate than the Dr's.

        Its come back and I watch it---its deadly if it is longer than several beats. So as previous posts said, hydration is important. its important to make sure its not v-tach, it could be orthostatic hypertension, when you get up quickly and get faint.

        Comment


        • #5
          feel like falling down

          Thanks for the responses again! Tom- you are right about the runs of v tach. I had this feeling at work and a nurse we know came into my department and took my blood pressure and it was fine, felt my pulse and she said it was tachycardia. does this mean vtach or just a fast heartbeat?
          I am not a nurse, but she told me to call my cardiologist. That was her opinion. My cardiologist could not figure this out. Just another complaint, ya know?!!
          What you say makes a lot of sense. I also get extremely pale like a white sheet. this is what others have told me when i am around people and this happens.

          Lisa thanks to you, I am staying very well hydrated. That gatorade propel, the flavored water is great!! I have not had a caffeine free diet pepsi since we talked. i only drink the propel or straight water now. It is much better to stay hydrated. Thanks again!

          One more question, if anyone knows, can you have v tach and not feel them? I think i was told this by my doctor when I wore the holter monitor and I told him I did not feel them. so this all makes more sense. Even with a pacemaker/icd.
          thanks,
          lisa a.
          diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

          Comment


          • #6
            Tom, the EP study you described isn't very useful in an HCM heart for predicting occurences of sudden cardiac death. Have you been evaluated for an ICD? Do you have one? The major risk factors are history of v-tach, history of blood pressure not rising appropriately during stress test, history of fainting, septal measurement of > 3 cm, and family history of sudden cardiac death. It sounds like you might need to be evaluated for the ICD if you don't already have one.

            Reenie
            Reenie

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

            Comment


            • #7
              Lisa, a heart rate above 100 is considered to be tachycardia. If it is caused by a disturbance in the lower chambers of the heart (ventricles), it is V-tach. If caused by a disturbance in the upper part of the heart (atria), it is referred to as an atrial tach (A-tach) or supra-ventricular tach (SVT). The v-tach is cause for much greater concern. Either can reduce the efficiency of the heart's pumping so you may feel tired, dizzy, short of breath, etc.

              A-tach still has the ventricles to help out with pumping, but V-tach is pretty much on it's own for pumping with no help from the atria.

              Yes, you can have either tachycardia without feeling it, esp if it is short runs. Linda

              Comment


              • #8
                Linda

                I think that is what i'm having from time to time i can just be standing and get very dizzy well i have been sitting before and gotten them too, i went for years and did this i always thought it was because i wasn't taking care of myself and alot of things have fallen into place since i was diagnosed

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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