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  • Wiring Problems?

    Hi All,

    I've had some odd things going on that have been bothering me for quite a while. I've had them long before i was ever diagnosed with HCM, but that doesn't really mean much since i've certainly had HCM long before i was actually diagnosed with it anyway. Thanks in advance for any input you may have.

    First of all... when i'm napping or sleeping, i will often be awakened by my body spasming. Not just my heart, but my entire body head to toe, and it feels as though i have just gotten an electrical shock. It's quick and painless, but disturbing nonetheless.

    The second thing that is happening, is that sometimes i get this strange feeling in my head that feels like i have a little electrical current dancing across my brain. It's actually not altogether unpleasant, but it really bothers me when this happens. It's right under the scalp, and honestly it feels like somebody has opened up my head and is tickling my brain. I know it sounds funny. I get a slight buzzing feeling in my ears and head, accompanied by this tickling feeling across my brain.

    The last time i talked to a doctor honestly about this, he prescribed me anti-depressants, so i've been keeping my mouth shut about it ever since. But these things really are kind of disturbing to me. I know it must sound like i've been dropping acid, but these are real physiological things that are happening.

    Any ideas?

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

  • #2
    Re: Wiring Problems?

    Jim, I have no idea. I do know that my husband will sometimes wake in a jerk like you're describing, especially when he's just falling asleep. I always thought he was dreaming. He's only had that crawly skin feeling - that I'm aware of - when he takes a certain decongestant, which he no longer takes. It was Entex and it isn't sold any more. I hope someone else can answer your questions.

    Reenie
    Reenie

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

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    • #3
      Re: Wiring Problems?

      Jim, I rarely sleep thru a whole night without getting woke up in this sudden jerk fashion.
      My wife claims I often wake her with a sudden jerk, so I must do it often thru the night.
      It's happened for so long and I have been taking meds for so long, I just write it off to that.
      However I cannot say I have experienced your other head sensation.
      Maybe another mention to the doctor is needed.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

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      • #4
        Re: Wiring Problems?

        I have had symptoms like you have described all my life. I was only diagnosed 3 months ago and thought I was a little nutty so I never mentioned it to anyone. I had a septal myectomy 3 weeks ago and an ICD. I have not had any of those symptoms since but like I said it has only been a few weeks. In addition to the tingling head and being awoken in sudden jerks I also had a gagging problem for the past couple of years. Every morning and night when brushing my teeth I would gag to the point of getting sick. I have no idea how these things are related to HCM but I have not had one gagging session since the operation.

        Good Luck to you.

        Kathy

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        • #5
          Re: Wiring Problems?

          I also have this gagging problem while brushing. Could be connected to ability to breath thru the mouth. Not sure if this is HOCM related - anybody else? I just got diagnosed with HOCM about a month ago and keep learning new things every day.

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          • #6
            Re: Wiring Problems?

            I have had the same symptom of waking up in a jerky fastion for years.
            I have theory for that... and I got some confirmation of my theory in ER.

            I believe that when we sleep, and if our pulse rate or BP ends up going very low, body is doing something to wake us up with something like an internal shot of adrenaline.
            When I was in the ER due to second degree heart block, and I was sleeping I got up couple of times in a jerky fashion, and every time that happened, my pulse rate had fallen close to 40.

            After I had a pacer, and my lower end pulse was set to 55, it never happened. Then, to avoid pacer driven conditions, Dr.s recommeded to allow resting heart rate to go down upto 45 after few months. And guess what now it happens once in a while.
            I don't have studies to support this theory, but it definitely explains my experiences so far.
            Ketan Thanki

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            • #7
              Re: Wiring Problems?

              Thanks for the posts everyone.

              Interesting. Sounds like the body jerk thing is pretty normal for a lot of people here. I kinda like kthanki's hypothesis of low heartrate. I'll have to ask my new cardiologist about it, but i'm pretty sure i'll just get the typical medical response... 'Well, i don't know, but i'm sure it's nothing to worry about.' That seems to be a favorite among my doctors.

              As far as the head thing is concerned, i guess it's especially worrisome since i've already had one bout with cancer and of course the mind wanders to all kinds of terrible things. It's hard to explain to a doctor that it's something in my head, without it sounding like it's something that's 'all in my head'. Know what i mean? I have no idea even what kind of tests they would run for that... is it an encephalogram that checks for electrical wierdness in the brain?

              Thanks again

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

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              • #8
                Re: Wiring Problems?

                with regards to a jerking motion while going to sleep, low heart rate or low BP isn't what causes this. REM sleep causes the CNS to fire quite intensely and it is very normal to jerk about when you are just going off to sleep, and particularily when a person is quite tired. This is something everyone does at one point or another. I have done it all my life and never have had a low BP or low heart rate.

                I am interested in the gagging reflex, however. I have also had this experience which intensified with my obstruction, subsided after my myectomy and was nonexistant for about 8-10 weeks and then came back again. As time goes on it has started to subside somewhat, but I have never heard anyone else say they had this and have it connected to HCM in any way. I don't know if it is, and have always wondered if it was, so reading others write of having the same thing is interesting.
                NEMC's (Boston) First Myectomy 7-22-2003

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                • #9
                  Re: Wiring Problems?

                  I have had these symptoms for years, but thought they were due to my tethered spinal cord.

                  Because I have alot of painful nerve sensations, they prescribed Elavil, which helps induce sounder sleep and decreases odd sensitivity. In large doses, this is considered an anti-depressant, but in smaller doses, it helps electrical pains. So if your Dr. prescribed this med, he was not just deciding to treat you as a head case.

                  I had an ablation in May and I am now off almost all medication except insulin shots for my diabetes. I've tried cutting my 50 mg of Elavil down, but my sleep quality deteriates and the nerve pains come back, so I'll stick with this one medication. It is also inexpensive, which also helps.

                  I also think that the thickness of our heart muscle generates spasms through the chest and these can extend up through the left chest wall, into the neck and head on the left side. I go to a chiropractor regularly to keep my neck unjammed----

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