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  • Is this a symptom?

    [Is this a symptom?]

    Author: Amy Nierman (---.tnt2.seymour.in.da.uu.net)

    Date: 08-24-02 15:34

    Have you ever got used to feeling the way you do and not realize that you could feel better? When I was pregnant with my daughter I felt WONDERFUL after I had her. I didn't realize how bad I was feeling until I felt better. When I've been asked if I have symptoms - I've said no. Certainly I would know if I was. Now I wonder. I get short of breath running up the stairs for example. I've always just thought to myself that I'm REALLY out of shape. (And maybe I am.) And I do get dizzy if I stand up too quickly. I've always been that way, but have always attributed it to the fact that I got up too fast. I've only blacked out once. And that was riding a rollar coaster at age 16/17- I knew I was going to black out and I did. I've just never road rollar coasters that have loops again. Are these symptoms? I'll tell the doctor next week, but I'm not very good at discribing what I'm feeling. (For example, I called gall bladder attacks - heart burn for 5 years.) I also have a fairly high tolerance to pain/discomfort. (Child birth was a breeze compared to what I thought was heart burn.)

    Please share your thoughts,

    Amy

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    [Re: Is this a symptom?]

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

    Date: 08-24-02 15:57

    Amy -

    you bring up a very good and serious point. Many of us with HCM have never known what "normal" is, we accept how we feel as "normal" when in fact it may well be far from normal.

    In my person expereience I know that shortly after my stroke in 1990, I said "I'm fine"...3 weeks later I said..Oh, NOW I am fine...1 month later I said " now this is better I am fine now"...Well Truth be told it was really like 6-8 months before I was back to nearly where I began. The last little bit...well it never came and 12 years later I can say it really took almost a year to be back to where I started or close.

    Also I have told many of you the story about not being able to see when I first woke up in the morning when I was young (12-14 years old). I would challange myself to see how far I could walk through my house before my "vision came in" (that what I use to call it). I thought this was "normal" ya know when people say "my eyes need to adjust" or similar....I thought my eyes had to adjust each morning by way of NOT SEEING ANYTHING for up to a minute or two! NOW when I get up I do it slowly so I do not have this happen!

    HCM is sneaky..the symptoms can come on so mild and so non threatening that it is easy to overlook them as "normal". See your doctor explain ALL the things you think are "normal" and let him/her help you detirmine what may infact be "normal".

    Best wishes,

    Lisa

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    [Re: Is this a symptom?]

    Author: Blaine (---.chartersc.net)

    Date: 08-24-02 21:01

    So, Lisa, what was the cause of the eye thing? I, occasionally, experience an almost kaleidoscopic affect, usually in the morning and usually for no longer than a few minutes. It seems to happen when my heartbeat is really strong, like the turning of the kaleidoscope is related to my pulse. It isn't blinding, but I don't think its normal.

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    [Re: Is this a symptom?]

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

    Date: 08-24-02 21:14

    I have been lead to believe that it was due to my obstruction and lack of blood flow when I stood up too fast.

    When I was a kid my gradient was over 60mm...but because Iam so odd My gradient dropped after my stroke/endocarditis to about 15mm...

    OK I know that is gonna spur on the WHY question....well it appears that the scar tissue formed on my mitral valve in JUST the right spot..therefor the MV became stiff and my SAM (systolic anterior motion) was decreased.

    So one way at least 1 in 1,000,000 if I had to guess...to avoid a myectomy or ablation is to have endocarditis, have a stroke..cause some brain damage...become partialy blind in one eye and then you MAY be able to avoid a procedure. I would suggest a myectomy any day over what I went through

    Hey but ya gotta keep smiling

    Hey everyone go visit the HCMA store..its open 24/7 www.cafepress.com/shophcma

    I can not believe how fast things are selling!!!!

    Lisa

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    [Re: Is this a symptom?]

    Author: Amy Nierman (---.tnt1.seymour.in.da.uu.net)

    Date: 08-24-02 23:28

    I only have a few more days to bug you all before I go to the doctor. Here's a few more questions - What does the term gradient refer to? I've seen it on several posts. And where does a gradient reading come from? And what is ejection fraction? And where does a reading for it come from? What should I expect the doctors office to what to do? My one and only echo was about 11 months ago and so where the EKGs they did.

    Also when I talked with the nurse at Riley Children's Hospital about my son, she said they would probably do an EKG and a Chest X-Ray on him. Why? (I'm sure their must be a good reason, I just want to know what they're looking for.) I've read that sometimes when kids are young they have to give them medicine to make them sleepy so they'll be still for an ECHO. Would they do that for an EKG? We did o.k. during the ECHO, the tech let my son eat smarties and a sucker. (The sucker was the winner because he never gets one of those.) Other than wiggling to the beat of his own heartbeat (which his mommy thought was precious), he did really good for his age. I'm just wondering if I need to stock up on smarties and safety pop suckers? Any other suggestions for the visit would be appreciated along with any questions I should make sure I ask the doctors about myself and him.

    I'm on of those people who like to be prepared and don't like the unexpected. If I know all the possibilites before hand, it helps me to feel more in control of whatever is happening. I'm just a little nervous about the appointments. Just a little afraid that they might talk about something I have no clue about?

    Amy

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    [Re: Is this a symptom?]

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

    Date: 08-25-02 12:05

    Amy,

    For what it's worth, your story sounds like my experience. I would get winded easily (SOB) doing little things. I was getting tired doing the things I used to do. So I joined a gym. My thinking was I must be out of shape. I found that the more I exersiced the worse I felt. After a couple of months of this I was blessed with atrial fibrilation to go along with my HCM. That brought everything to a head very quickly. Now three years later and a pacemaker added I do feel better, but only have memories of what it felt llike to feel "really good." But I have learned to be so very thankful for what I do have. And that's the gift of life and love.

    My advice is to be diligent with your doctor visits and the all of the testing and procedures that may be adviced. And also, keep in touch with Lisa and the HCMA when in doubt.

    All the best to you, Steve

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    [Re: Is this a symptom?]

    Author: Glen (---.com)

    Date: 08-26-02 08:29

    Amy, I had been taking Inderol and Bi-quin for my HCM and arrythmia for 30 years and thought I was doing just great, I would have occational bouts of A-fib and constantly had pre-mature heart beat (skipped beat) but I thought that was part of the package and I lived with it.

    A few month ago my doctor switched me to Atenolol and Amiodarone and what a difference. This combo really works for me, since than I have had no A-fib and have not detected a single premature beat.

    Fortunately I am able to exercise moderately and I feel a lot better doing it, so now this is my norm. and I feel great, maybe they will come up with something better for me in the future and then I would know what it is to feel completly normal.

    Glen

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    [Re: Is this a symptom?]

    Author: Ryan (199.245.220.---)

    Date: 08-26-02 19:41

    Glen, since you brought up premature beats.... Does anyone know how common this is? I've had to wear a 24 hour monitor and I have PACs and PVCs about once an hour. I don't feel threatened by them... but is there a normal range for PACs and PVCs?

    Just Curious,

    Ryan

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    [Re: Is this a symptom?]

    Author: Glen (---.com)

    Date: 08-27-02 08:21

    Ryan, my understanding is that premarure heart beat (a skipped beat feeling) is even fairly common amongst people with normal hearts and is not considered serious in most cases. I don't think there is a normal range.

    Just annoying as ****, especially at night when you notice it more.

    In case you don't know what it is, it was explained to me like this.

    A normal rythym is beat - beat - beat - beat.

    A premature beat is beat - beat,beat (two quick ones and then a pause) - BEAT a more powerful one. This is the one you notice happening after the pause and therefore the feeling you had a skipped beat. The more powerful one is because during the pause after the two quickies the heart fills with more blood and has too push harder to get it out.

    Hope this answers your question.

    Glen

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    [Re: Is this a symptom?]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-27-02 08:56

    Dear Ryan,

    Since pvcs and palpitations are inherently abnormal (although even healthy people have a premature beat once in a great while), there is no "normal range" except for you and what is typical for you.

    As long as you are being treated by an HCM specialist and you are properly medicated, that is about all you can do. If they really bother you, talk to your doctor about options.

    Sarah
    NOTE: This is a post from the previous forum message board.

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