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Hi everyone,
I'm so glad I came across this website/forum - there is so much great information and personal experiences that cannot be found in any book or from any doctor. I've been looking through the posts - some of which I can relate to.
I'm 21 years old and I was diagnosed with HCM when I was 16. I've always been on only one medication for HCM at a time, but I've went through quite a few drugs, either because of side effects or continuing symptoms. I started off with verapamil, then diltiazem, then atenolol, inderal, bisoprolol, metoprolol, and right now I'm back on bisoprolol 2.5mg od.
I have variable symptoms. Some days are good, and others not so good. I get palpitations once in awhile and shortness of breath when climbing stairs. My main combination of symptoms is left arm/wrist pain combined with tachycardia (over 100bpm) and chest heaviness - this is an ongoing problem (occurs every few days). Over time, I've gotten to understand what triggers these episodes - heavy meals, stress, exertion...but sometimes it seems, they occur for no reason at all. I can't lie down when I get these symptoms b/c it just makes everything worse - I usually just sit down and place a ice pack on my wrist/arm/chest. Sometimes I even take 1.25mg of my bisoprolol and find I feel better in about an hour. I've talked to my family physician and my cardiologist about these episodes numerous times, but I never seem to get a definitive answer - maybe it's just inherent of my HCM and nothing can be done about it.
After reading many posts, I've realized, I don't know much at all about my HCM. I don't know what my "gradient" is...I think I'm obstructed (but not sure), I do have a murmur, and my septal measurement my cardiologist said is "twice that of normal" - 2.2cm seems to ring a bell in my mind.
After reading some posts, I do have some questions:
1. Which patients with HCM should get surgery or an ICD. Some more history...my uncle passed away in his mid- thirties (he had HCM) and my blood pressure during my last stress test dropped instead of rising.
2. Could someone tell me a little bit more about AED's? Do HCM patients have an AED at home? Is this recommended?
3. Do most people with HCM visit a HCM specialist or a cardiologist? I visit my cardiologist annually.
4. My cardiologist told me that I should eat lots of salt - I've read prior posts on this but am still not sure why. I realize that many ppl with HCM have low blood pressure and that eating enough salt will normalize their blood pressure; however, I recall one of my cardiologists telling me that the medication I'm taking works by lowering blood pressure so that my heart doesn't have to work as hard to pump blood - so wouldn't it be counterproductive to eat more salt??
5. I've been taking Coq10 for about 5 years now (basically since I was diagnosed) - I was wondering if most people tell their specialist/cardiologist if they are taking CoQ10 or any other supplement? I have not told my cardiologist/family physician about taking CoQ10 mostly because I'm concerned they may react adversely and tell me to stop taking it (prior experience with a former family physician led to a lecture about how you should never take any natural supplements as they can be dangerous).
This has gotten to be a very long post. Thanks in advance =)
TrappedIllusion
I'm so glad I came across this website/forum - there is so much great information and personal experiences that cannot be found in any book or from any doctor. I've been looking through the posts - some of which I can relate to.
I'm 21 years old and I was diagnosed with HCM when I was 16. I've always been on only one medication for HCM at a time, but I've went through quite a few drugs, either because of side effects or continuing symptoms. I started off with verapamil, then diltiazem, then atenolol, inderal, bisoprolol, metoprolol, and right now I'm back on bisoprolol 2.5mg od.
I have variable symptoms. Some days are good, and others not so good. I get palpitations once in awhile and shortness of breath when climbing stairs. My main combination of symptoms is left arm/wrist pain combined with tachycardia (over 100bpm) and chest heaviness - this is an ongoing problem (occurs every few days). Over time, I've gotten to understand what triggers these episodes - heavy meals, stress, exertion...but sometimes it seems, they occur for no reason at all. I can't lie down when I get these symptoms b/c it just makes everything worse - I usually just sit down and place a ice pack on my wrist/arm/chest. Sometimes I even take 1.25mg of my bisoprolol and find I feel better in about an hour. I've talked to my family physician and my cardiologist about these episodes numerous times, but I never seem to get a definitive answer - maybe it's just inherent of my HCM and nothing can be done about it.
After reading many posts, I've realized, I don't know much at all about my HCM. I don't know what my "gradient" is...I think I'm obstructed (but not sure), I do have a murmur, and my septal measurement my cardiologist said is "twice that of normal" - 2.2cm seems to ring a bell in my mind.
After reading some posts, I do have some questions:
1. Which patients with HCM should get surgery or an ICD. Some more history...my uncle passed away in his mid- thirties (he had HCM) and my blood pressure during my last stress test dropped instead of rising.
2. Could someone tell me a little bit more about AED's? Do HCM patients have an AED at home? Is this recommended?
3. Do most people with HCM visit a HCM specialist or a cardiologist? I visit my cardiologist annually.
4. My cardiologist told me that I should eat lots of salt - I've read prior posts on this but am still not sure why. I realize that many ppl with HCM have low blood pressure and that eating enough salt will normalize their blood pressure; however, I recall one of my cardiologists telling me that the medication I'm taking works by lowering blood pressure so that my heart doesn't have to work as hard to pump blood - so wouldn't it be counterproductive to eat more salt??
5. I've been taking Coq10 for about 5 years now (basically since I was diagnosed) - I was wondering if most people tell their specialist/cardiologist if they are taking CoQ10 or any other supplement? I have not told my cardiologist/family physician about taking CoQ10 mostly because I'm concerned they may react adversely and tell me to stop taking it (prior experience with a former family physician led to a lecture about how you should never take any natural supplements as they can be dangerous).
This has gotten to be a very long post. Thanks in advance =)
TrappedIllusion
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