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  • heart racing without meds?

    [heart racing without meds?]

    Author: Dolly (---.pressenter.com)

    Date: 07-18-02 20:02

    First a quick reminder of the history......My 12 year old son Andrew has HOCM. He was diagnosed at the age of 5, just one year after my brother's 7 year old son died of HOCM. (My nephew WAS being treated at the time of death).

    Andrew had a myectomy at the age of 6....... after his gradient sky rocketed in 4 weeks time and his symptoms became severe. His gradient dropped drastically after the myectomy, which I consider a successful surgery! With each yearly echo since the surgery though, there has been steady progression of his septum and wall thickness. Due to this, and the family history of a young child experiencing sudden death, he was implanted with an ICD at the age of 9. He has also been on beta-blockers since the day of diagnosis. In my opinion he has been well taken care of and being treated with every precaution possible. I also feel, considering the severity of his HCM, that he is doing pretty well.However, he has had the same complaint, or should I say "comment" about what I consider a symptom for some time now. (over a year) and I am just not sure what to think.

    Andrew is seen every 6 months, and at his last appointment I finally mentioned to the cardiologist that Andrew has been commenting/complaining on a regular basis, that if he doesn't take his beta blocker first thing in the morning he feels his heart racing and flip-flopping at the slightest movement. And on the rare occasions that we leave for overnight somewhere and I forget his pills, he complains that his heart races and "flip-flops" pretty steady, all day. On the days he takes his pill late, he says the racing stops after he has taken it.

    His mention of this has become quite regular in the mornings before he has taken his pill. When I mentioned this to his cardiologist back in April, he basically told us that not taking his pill should have nothing to do with it. Usually, once Andrew is told something like that from his card. he quits complaining about the problem. However, he continues to comment about this early morning racing heart problem even after being told by his card. that it wasn't a concern, or that it had nothing to do with his pills. (Andrew takes 50mg of Atenolol in the mornings.)

    Does anyone else experience these "funny feelings" in their heart first thing when getting up in the morning? I am not so sure I should shrug these off too quick considering he is still mentioning them! DO you think this just may be one of those "imaginary" symptoms that come along with some serious illnesses?

    Dolly

    Andrew's Heart Story at http://www.designsbydolly.com/andrew

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    [Re: heart racing without meds?]

    Author: susan (---.175-114.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-18-02 20:42

    oh dolly,

    this is not imaginary, its real. if i don't take my meds on time i get the racing heart and flip flopping. i take them as soon as i wake up and about an hour before bed time. sometimes i have to take an extra during the day but not that often. i take 50mg of atenol 2 times a day, sometimes i take an extra if i over do it. but if i don't take my meds on time i do get the heart racing thing. your baby is not imagining anything.

    susan

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    [Re: heart racing without meds?]

    Author: susan (---.175-114.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-18-02 20:43

    oh one more thing, don't let him skip his meds, its important that he takes them on time.

    susan

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    [Re: heart racing without meds?]

    Author: Dora (---.proxy.aol.com)

    Date: 07-18-02 20:50

    Hi Dolly,

    I am also a HCM patient and am on Cardizem and Toprol XL, and I also have a faster heart beat and what is call palputations if I don't take my meds. That is my reminder if I forget. Usally the Cardizem is the one that works, which I take first because it works better on an empty stomach. I don't seem to have the same problem with the Toprol XL. I am told the palputations are nothing to worry about, but I feels so crazy in my head that I have a hard time believing it is nothing to worry about. As for it being something to worry about the fast heart beat I am not sure. I have made it a habit to take my Cardizem as soon as I get up, and therefore unless something unusall is going on I don't forget anymore.

    Dora

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    [Re: heart racing without meds?]

    Author: Dolly (---.pressenter.com)

    Date: 07-18-02 21:08

    Dora and Susan,

    Thank you so much for your responses! As I said, once we have an answer from his cardiologist about things he usually quits mentioning the problem. But with this he continued to mention it, so I was pretty sure it was really happening!

    About taking his pill every morning.........we very seldom go off overnight without it, but it does occasionaly happen. Our daily routine at home is.......when I get up the first thing I do is I put it in a "pill cup" and set it next to the sink every morning. When he is finished with his breakfast he sees it and takes it when he puts his bowl and glass in the sink. Then he puts the cup away. At times though, he does not take his things to the sink (typical 12 year old!) and goes off playing. It is a short time later he will come in and ask if he took his pill and says that his heart is racing. We go in the kitchen and look and sure enough he didn't take it. Not long after he takes the pill the racing stops. So I guess the racing heart has also become his reminder to take his pill too!

    thanks again! I feel better knowing he is NOT imagining it!

    Dolly

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart racing without meds?]

    Author: Sue Harry (---.58.234.228.Dial1.Tampa1.Level3.net)

    Date: 07-18-02 21:55

    Hi! My history is very different from what you described. But when I had a similar experience with taking Atenolol 50 mg daily my situation improved by changing to taking a divided dose, 25 mg, every 12 hours. Because of my schedule I take it around 11a and 11p. This eliminated waking up with unpleasant symptoms.Maybe for your child a different time frame needs to be considered because of his school schedule. But you may find taking a divided dose will help improve the situation. I must also stress that for me missing a dose is a big problem. I get very uncomfortable if I do so helping him remember not to miss any is very important. Of course you need to get approval from your Dr. before you change anything related to his medications or schedule. Best wishes -- Sue

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    [Re: heart racing without meds?]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 07-18-02 22:07

    Dolly,

    I have been doing what Sue does for several years now & I think it helps to stabilize my symptoms. The doctor & the literature say it is a once-a-day med with effects lasting 24-hours, but my symptoms got worse toward the end of the 24-hour period. So I take half of the daily dose every 12 hours. The other nice aspect of that is that when I am late with a dose, I know I'm still covered from the previous dose.

    And it certainly won't hurt! Good luck to Andrew,

    Pat

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    [Re: heart racing without meds?]

    Author: Board Moderator (Sarah Beckley (---.tnt4.chiega.da.uu.net)

    Date: 07-18-02 22:58

    Dear Dolly

    I don't think your son imagines it at all. I can't imagine why the cardiologist would say that tachycardia doesn't have anything to do with his medication when that is what beta-blockers do---slow down and steady the heart rate!!!

    I would definitely talk to the doctor about splitting your son's dose to am and pm, and see if that doesn't improve the situation. Also, your son is growing and he may just simply need a larger dose.

    take care

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart racing without meds?]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 07-19-02 08:45

    Pat,

    I had to comment on the once a day Attenenol comment. My docs have me taking it twice a day. The HMO decided it is a once a day medicine and would only give me 30 pills. Talk about red-tape. It took several calls from me and the doc's office to convince the HMO pharmacist that I had a rare disease and needed it twice a day. Every month though is a new renewal experience.

    Jerry

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    [Re: heart racing without meds?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-19-02 19:24

    Dolly

    I have emailed you a private responce as well but thought I would chime in here myself. I have been having the very same issues over the past few months in fact today was really bad! (OK guys WHEN HAVE YOU HEARD ME COMPLAIN...so you know I meant it

    I called my dr to discuss my meds and found out my local guy is out of town for 2 weeks - they wanted me to come in and be seen by someone else in the practice...my responce..No thanks you'll lock me up in the hospital for the weekend because you will not know what to do with me and I have too much to do!

    I'll wait til he gets back!

    Anyway... Medications seem to work for a period of time then need to be re evaluated, it may very well be time to look at the meds, your sons size and his ability to take his meds on a regular basis (VERY IMPORTANT!) and maybe make some changes - I would not worry to much (i know your a mom your gonna worry anyway) it is very common to need to make adjustments in meds.

    Best wishes to all!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart racing without meds?]

    Author: Jerry (---.d00832.dlup.digitaldune.net)

    Date: 07-20-02 00:49

    Jerry,

    I'm lucky so far in that no one at the insurance company has questioned the doctor's prescription. And the doctor accepted my description of the symptoms I was having & that I wanted to try it twice daily. It probably helped that I also have high blood pressure & keep track of it on a frequent basis, so he could see the regular fluctuations morning to evening.

    Some days I simply remind myself it's another "learning experience": HCM, my body's responses, the insurance company, responses from others. It's the lemons & lemonade saying. Other days I'm not so philosophical. . . .

    I'm told by a physician who is also a politician that HMOs are going to go by the wayside in the near future. If you're lucky, Jerry, maybe yours will be replaced by something with many fewer non-health-educated employees making the important decisions--like when you should take your meds!

    Pat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart racing without meds?]

    Author: karen (---.dyn.optonline.net)

    Date: 07-21-02 12:37

    Hi Dolly,

    Have these episodes of flip flopping or the racing been documented on an event recorder or 24 hour monitor? It would be great if the doctor could see what Andrew is feeling.
    NOTE: This is a post from the previous forum message board.
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