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ICD & muscle twitches

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Debbie Find out more about Debbie
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  • ICD & muscle twitches

    Just wondering...

    Have any of you out there with an ICD experienced any new and strange "muscle spasms" since you got your ICD?

    About a year after I had my ICD implanted, I got this muscle spasm in my lower left side. It first occured when I tried to sleep on my right side. When I laid on my right side, the muscle would jump continuously.

    It also affected me sometimes when I was sitting up, relaxing. And, as time went on, the muscle would spasm when I was laying on my back, and even when laying on my left side. I mean, this "muscle spasm" was intense... it would make me catch my breath, almost like a punch in the gut. Hard to explain. But the weird thing was, that it matched my heartbeat exactly. This went on for a year and a half.

    Anyway, I just figured it was back problems or something. I mentioned it a few times to my cardiologist, but he wasn't concerned about it, and I probably wasn't articulating it correctly to him in order for him to take it more seriously. I even went to my GP about it, and he thought it was strange that it mimicked my heartbeat, but said, well, it was a muscle spasm, and I would have to deal with it.

    Guess what? A few weeks ago, I went in for my ICD check. Something the tech did shot a spasm down my left arm.

    Long story short, I told him what was going on w/ the spasm in my stomach/side, and he said, yep, it's due to an insulation problem with one of my leads. Apparently, the pacing that my ICD is doing is "capturing" another muscle.

    I will have to go in and get the lead replaced eventually, but for now, they set my pacing back from 50 bpm to 40 bpm. The spasm is gone, and I can finally sleep well again!

    I thought this might be important information for anyone else out there w/ an ICD. I wish I had seen something about this somewhere... it could have saved me a lot of discomfort.

  • #2
    Re: ICD & muscle twitches

    I haven't heard of that before, but I'm glad you mentioned it. There may be someone else out here who can learn from your experience. I hope that the replacement goes smoothly and am really glad that you can sleep at last!

    Reenie
    Reenie

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

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    • #3
      Re: ICD & muscle twitches

      Debbie,

      I have been having muscle spasms regularly for the last 6 months (after my first shock). It always happens when I'm sleeping or just falling asleep (maybe my heatrate drops momentarily and I get paced). It is typically very short and in my upper chest. I have to see my cardiologist tomorrow so I'll ask him about the insulation. Thanks for the information

      Eric

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      • #4
        Re: ICD & muscle twitches

        Hi Debbie-

        I just printed off your question for my husband - and faxed it to my husband's doctor's office - he's at his Primary Care appt. right now and thought he might be able to mention it to his doctor. He's having wierd pains in his sides and arms ever since his new hematologist checked the lymph nodes under his arms. She said everything is fine, but now he can't figure out why he's hurt for the 2 months since. Also, he says sometimes when I touch him he gets wierd tingling in his arms - we never thought much about it either until I read your post - another thing to check out!?! Thanks much for the info. Take care.

        Ange

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        • #5
          Re: ICD & muscle twitches

          Eric and Ange,

          Wow, Eric, your experience sounds just like mine, only my twitch was in my diaphram.

          I went to see my EP Dr. last week, and she said that my situation was very common. I don't know why more people don't know about it, then...
          kinda strange.

          Anyway, mine was for sure happening when my ICD paced me. Like I said earlier, they turned down the rate at which it paces me, and the "muscle spasms" haven't happened since.

          Let me know what you find out, guys. I have been sharing this info. w/my Dr.s and they are finding it interesting.

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          • #6
            Re: ICD & muscle twitches

            When my 1st defib was implanted (1997) I had a 'twitch' in my diaphram that happened anytime I leaned to the left.

            The solution - change the settings on the device and it has never happened again. I had actually forgotten about this until reading this post.

            OK now for the cool story - I had my ICD implanted in Boston - but did not know about the "twitch" until the drive back to NJ. I went to Morristown memorial to have it looked at. While walking down the hall I heard 2 men talking - one of which had a very familar voice. I looked up and Joe Pesci was standing in front of me! He had a family member in the hospital and was visiting.

            Now for the small NJ world I live in - last summer at the NJ shore I was leaving a resturant with Adam and Becca "Goodfellas"-no joke- and who was walking in as we were walking out - you got it Joe Pesci again.

            FYI he was a nice guy both times I saw him.

            Life in NJ -hey ya never know

            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)

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            • #7
              Re: ICD & muscle twitches

              Hi All-

              Well, when I finally saw Alan at about 9:30 last night, I asked him what the doctor said. He said he didn't even mention it, because he didn't think his doctor would know anything about it. I will definitely mention it when we get to Boston on Aug. 13. I'm making notes!!

              Ange

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              • #8
                Re: ICD & muscle twitches

                Hi all,

                In relation to this post, just wanted to say that I am getting a new lead in December. (Or as my EP calls it, a "lead revision".)

                She believes the lead has faulty insulation. I have had very minor "shocks" down my left arm, which make my whole arm jump. This has happened once when I was sittiing at the computer, and 3 times when I was making my (decaf ) coffee in the morning. It also happens when I go in for my ICD check.

                Also, my side jumping is happening again, periodically. Not regularly, but here and there.

                My ICD is reading movement in my left arm, when I raise my arm above my head and wiggle it around. My EP says that it knows the movement is interferance, but also is reading it as tach.

                If I don't get the replacement, I will get shocked as a result of the confusion. Simple explanation, but there it is.

                Thought you may find this interesting, or informative, as this doesn't seem to be all that common...?

                Debbie

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