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nancylv Find out more about nancylv
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  • other symptoms

    I don't usually post to this board but I wanted to ask some people who have had HCM for some time about some symptoms my son is experiencing. He is 17 now, went into cardiac arrest at age of 13 on football field and was saved by an AED. Has an AICD and no obstruction but apparently a very thick septum. Either 25 or 35 depending on which doctor does the echo and whether they include a prominent muscle bar in the right ventricle which really isn't neccessarily a part of the septum.

    Anyway, he has these episodes of what I thought for a long time were hypoglycemic in nature although I'm still not sure what they are. He gets very hot, even when it is not hot in the house and no one else is hot. He also, breaks out in a clammy sweat and experiences a lot of anxiety. It's almost like a panic attack of some sort He also has the anxiety at other times to the point where it is taking over his life. This is not a kid who worries about dying and so forth as he played 2 yrs of competitive high school basketball before he had to quit because he passed out due to a very fast arrhythmia and then got shocked. He doesn't have a lot of symptoms, still runs around and plays park ball and goes to gym. I would say his biggest symptom is tiredness if he doesn't get enough sleep, fluids etc.

    I am very concerned about these episodes because he also has mood swings along with them and gets easily irritated. I guess you could say he is very high strung. Please respond if any of you have experienced such things.

  • #2
    Could it be that he is having arrythmias at the time he is experiencing these symptoms? Is his ICD set to record but not treat non-sustained arrythmias? Depending on the device, you can have it set to record but not treat arrythmias over 150 bpm.

    Alternatively, he could wear a holter monitor (for 24 or 38 hours) or an event monitor (for a week up to a month - you push a button when you feel symptoms) to see if that is what is causing the episodes.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      He doesn't admit to palpitations and on upon his last visit which was very important because he was either going to be cleared for driving after being restricted for one year or not.(part of the sacrafice with playing sports that your doctors don't warn you about) his report said he had no episodes of non-sustained or sustained ventricular tachycardia. He also has no episodes of paroxysmal supra ventricular tachycardia over several months and no sensed episodes. No outflow tract obstruction and normal left ventricular systolic function. mild mitral and tricuspid regurgitation with mild pulmonic insufficiency. I believe his unit is set at about 160. He has several times in the past been tested on the exercise /echo and had no problems passing. I will have to ask his dr. next time if he is having any arrhythmia's that would not be recorded. His report also says regular rhythm, S1 normal, low pitched grade 2/6 systolic ejection murmur no S3 or S4, apical impulse not displaced.

      He is on Sotalol 120 mg. He had a very tiny VSD when he was a baby which did not close until about age 7. This is why he has seen a cardiologist since age 4. He has had many many echos even by different doctors and HCM was still somewhat missed even up to one month before. It was diagnosed at age 9 but then a specialist evaluated him and cleared him from HCM. Then at age 13 he even had an echo 1 month prior to event. He was told he had athletic heart and was fine. He also passed all sports physicals etc. every year and no irregular EKGs were reported. If I had known at the time that there is a fine line between an athletic heart and an HCM heart it would have been helpful.

      I had one specialist tell me that the "hot" episodes were a result of a breakdown in the sympathetic nervous system. Well what does this mean and why is it happening? Is it a part of having HCM? If not is it due to other metabolic changes? I just want to know if other HCMers have these symptoms along with extreme anxiety? He tested negative for all 5 myosin chains and to date no mutation has been found. He is adopted so there is no family history.

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