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HCM symptoms getting worse over time
Hello, my AHCM symptoms (non obstructive type), specifically chest pain, shortness of breath, seem to be getting worse as I get older. I was diagnosed back in 2008 and have an ICD. My doctors say nothing has changed with my EKG. I'm getting another stress-echo done next. Has anyone experienced this and is there really anything to be done about it except learn to live with it? Might it be something else going on? Lungs seem fine. Thank you.
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Hi @metta, it looks like this is your first post in the Hypertrophic Cardiomyopathy group, welcome!
You ask good questions. Hopefully the stress echo you have coming up will help you and your cardiologist determine what is going on, and you can find out why your symptoms seem to be getting worse.
I can't answer with medical advice, but I can sat that many of the folks in this group are here because they too have worsening symptoms over time. HCM is a fickle and elusive condition, and none of us are the same, but we do share many things in common. Progression to the dreaded obstructive phase (HOCM) can happen slowly, or suddenly, so it's good you are actively seeking medical opinions.
"Learning to live with it" doesn't sound like a great option, so keep pursuing further and get those answers.
Hopefully your cardiologist is really educated in the treatment of HCM.
Have you considered a second opinion?
Are you near a Center of Excellence?
Hi, it's @metta again. Still having almost constant chest pain, intermittent shortness of breath, light-headed etc. Well I've done research and Apical HCM, what I have, generally is non-obstructive and has its own set of tendencies that differ from HCM or HOCM. Has anyone with AHCM had a CMRI that was helpful in figuring out a possible treatment? My doctors have scheduled another stress echo, which could be instructive, but I think the CMRI would give me the best indication of exactly what's going on. Does anyone have experience with these issues? I have an ICD so I have protection if the worst should happen, but the daily pain is really getting to me. My ICD checks have indicated short atrial and ventricular runs that have increased since the beginning of 2025. Thanks for any ideas.