Tweet
[Newbie.....]
Author: Christi (66.141.203.---)
Date: 04-24-02 19:26
Hi! I'm Christi from Oklahoma. I was diagnosed with cardiomyopathy after having a child 9 years ago. Even today, after having it for so long, I don't know alot about it. Cardiologists having told me alot other than do not have any more kids. I have been asked if I had a bad virus as a child but it's uncertain exactly why I have cardiomyopathy. I get very discouraged by the doctors I have gone to.
My pvc's used to be uni-focal and are now multi-focal. I get dizzy several times a day. I'm taking 50 mg of Toprol but it's not fixing the dizziness. My ejection fraction is 35%. And I'm having problems with shaking. Does anyone else get shakey? A doctor I work with told me that Toprol is sometimes given to treat shaking so it's weird that I'm shaking and I'm already on the medication. I also wonder why my cardiologist doesn't put me on Lassix. I took it before when I was seeing someone else.
I would love to hear from others! I don't talk about my problems much to my family. And even my co-workers don't know how hard it is for me to just get my work done sometimes.
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[Re: Newbie.....]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-25-02 00:07
Dear Christi
It sounds like you are in dire need of seeing somone who _knows_ HCM and can treat you properly. Please call the office at 973-983-7429 between 8 and 8 EST to get the name of someone near you.
HCM is genetic. Whether you are a fluke or not, it is genetic. You must have your child tested (echocardiogram) every year till she/he is in her 20s and then every few years b/c it shows up later in life and can go without symptoms for a long time.
Has anyone in your family died young? Had other heart problems? Sometimes HCM "runs silent" until someone gets sick and then everyone gets tested and it finally gets diagnosed.
A good cardiologist will answer all of your questions and be knowledgable about HCM, but many aren't.
Let us know how it goes,
Sarah
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[Re: Newbie.....]
Author: Christi (204.107.242.---)
Date: 04-25-02 08:42
I was diagnosed at the age of 20. I had a c-section because they thought I was pre-eclampsic. But even at a younger age I was easily out of breath during sports and never liked running longer distances. My mother has been told she has a heart murmur but nothing more. Both my mother and my sister have asthma so I thought maybe I was asthmatic too at a younger age. The only person I remember having heart problems was my great grandfather, who died of a heart attack at 65 suddenly. Nothing that happened at an earlier age.
I've called my cardiologist to see if he will do something about the shakey/dizziness thing. My next appointment isn't until the end of May because they felt I was doing "ok". UGH! When I am there, I am definitely going to check and see if I can get my results from my stress test and my cardiac MRI. My cardiologist is an hour and a half away so it's not easy to get an answer from him over the phone.
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[Re: Newbie.....]
Author: Sarah Beckley (---.dialup.mindspring.com)
Date: 04-25-02 13:52
Dear Christi
Please call the office to find out who you can see that has a better grasp of HCM than your current doctors. It does make a huge difference.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Christi (204.107.242.---)
Date: 04-25-02 14:07
The nurse called me back today. I am to cut my Toprol back to 25mg again. This doesn't make sense at all because I took 25mg for the whole month of January and it didn't control my palpitations. Guess I have to wait and see!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Sarah Beckley (---.dialup.mindspring.com)
Date: 04-25-02 15:51
C
It sounds like they are trying to see if the Toprol is causing the shakes. Also, if they are going to switch you to something else, you have to be weaned off the beta-blocker b/c cold turkey causes withdrawal.
Keep us posted.
S
Author: Christi (66.141.203.---)
Date: 04-24-02 19:26
Hi! I'm Christi from Oklahoma. I was diagnosed with cardiomyopathy after having a child 9 years ago. Even today, after having it for so long, I don't know alot about it. Cardiologists having told me alot other than do not have any more kids. I have been asked if I had a bad virus as a child but it's uncertain exactly why I have cardiomyopathy. I get very discouraged by the doctors I have gone to.
My pvc's used to be uni-focal and are now multi-focal. I get dizzy several times a day. I'm taking 50 mg of Toprol but it's not fixing the dizziness. My ejection fraction is 35%. And I'm having problems with shaking. Does anyone else get shakey? A doctor I work with told me that Toprol is sometimes given to treat shaking so it's weird that I'm shaking and I'm already on the medication. I also wonder why my cardiologist doesn't put me on Lassix. I took it before when I was seeing someone else.
I would love to hear from others! I don't talk about my problems much to my family. And even my co-workers don't know how hard it is for me to just get my work done sometimes.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-25-02 00:07
Dear Christi
It sounds like you are in dire need of seeing somone who _knows_ HCM and can treat you properly. Please call the office at 973-983-7429 between 8 and 8 EST to get the name of someone near you.
HCM is genetic. Whether you are a fluke or not, it is genetic. You must have your child tested (echocardiogram) every year till she/he is in her 20s and then every few years b/c it shows up later in life and can go without symptoms for a long time.
Has anyone in your family died young? Had other heart problems? Sometimes HCM "runs silent" until someone gets sick and then everyone gets tested and it finally gets diagnosed.
A good cardiologist will answer all of your questions and be knowledgable about HCM, but many aren't.
Let us know how it goes,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Christi (204.107.242.---)
Date: 04-25-02 08:42
I was diagnosed at the age of 20. I had a c-section because they thought I was pre-eclampsic. But even at a younger age I was easily out of breath during sports and never liked running longer distances. My mother has been told she has a heart murmur but nothing more. Both my mother and my sister have asthma so I thought maybe I was asthmatic too at a younger age. The only person I remember having heart problems was my great grandfather, who died of a heart attack at 65 suddenly. Nothing that happened at an earlier age.
I've called my cardiologist to see if he will do something about the shakey/dizziness thing. My next appointment isn't until the end of May because they felt I was doing "ok". UGH! When I am there, I am definitely going to check and see if I can get my results from my stress test and my cardiac MRI. My cardiologist is an hour and a half away so it's not easy to get an answer from him over the phone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Sarah Beckley (---.dialup.mindspring.com)
Date: 04-25-02 13:52
Dear Christi
Please call the office to find out who you can see that has a better grasp of HCM than your current doctors. It does make a huge difference.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Christi (204.107.242.---)
Date: 04-25-02 14:07
The nurse called me back today. I am to cut my Toprol back to 25mg again. This doesn't make sense at all because I took 25mg for the whole month of January and it didn't control my palpitations. Guess I have to wait and see!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Newbie.....]
Author: Sarah Beckley (---.dialup.mindspring.com)
Date: 04-25-02 15:51
C
It sounds like they are trying to see if the Toprol is causing the shakes. Also, if they are going to switch you to something else, you have to be weaned off the beta-blocker b/c cold turkey causes withdrawal.
Keep us posted.
S