HCM symptoms getting worse over time

Posted by metta @metta, 6 days ago

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.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | 5 days ago

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?