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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 14, 2025 | Replies (1089)Comment receiving replies
I just joined this group and would like to say "hi" to all the members. No side effects so far but am quite anxious about the possibility. For those who have experienced them, when do they usually start?
Replies to "I just joined this group and would like to say "hi" to all the members. No..."
@debrasheila I join @walkinggirl in a warm welcome to Mayo Clinic Connect.
Question: Were you recently diagnosed and wondering what to expect from your new and unwelcomed HCM condition? Just wondering if you meant what to expect symptom-wise from HCM...
HCM is weird, and no two people will have the exact same symptoms. Although, many of us do share a lot in common. Shortness of breath on minimal exertion (at times) racing heart, fullness in the neck, chest pain, murmurs, and eating a big meal can wipe some out. There are good days, and bad days. And some progress super slow only needing a beta blocker, and others end up with open heart surgery.
It's important that your cardiologist is top notch in the treatment of this, and it's equally important that you learn as much as you can about this too. It's going to be your job to be your best friend and advocate for you. And if you're educated about this, you can help in the decision making in your case.
Allow me to add to your reading list:
https://www.4hcm.org/
Another Question: Are you near a Center of Excellence? When do you see your doctor next?
@debrasheila my first symptoms were palpitations that lasted 3 days but looking back prior to diagnosis there was a light bulb moment. Now I know why I cannot drink any caffeinated drinks after 11 am otherwise I will not sleep at all, I cannot sleep on my left hand side because the strength of my heart beat keeps me awake. Any amount of alcohol makes me feel dreadful the next day. Some foods will trigger palpitations like excessive potassium and artificial sugars are a real no because they trigger palpitations. I also can feel each and every heart beat which I now realise is not normal for many. So in reality, I actually had a fair number of indicators that something wasn't normal.
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@debrasheila Glad to meet you! I assume you are asking about the side effects of HCM! We are all different and can relay different experiences. May I suggest looking at the Mayo Clinic website and reading about HCM. Here's a link: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
I had some of the symptoms, never had pain or fluttering as many do. For me, 15+ years with only a mitral valve murmur and increasing thickness measurement from echoes were the only symptoms. Later on, shortness of breath increased as the disease progressed. It is important that care from a HCM cardiologist/COE institution be #1 on your list!