← Return to HOCM Symptoms: Why are they starting now? What next?

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@oferb69

Hi Colleen,
Thank you so much for your welcome and links for more info.
I am not on any medications as the cardiologists are unsure whether my symptoms necessarily relate to the mild HCM I have been diagnosed with. So medications and surgery are not an option at all at this stage. Yet I am with strong heartbeat palpitations and a pulse that can reach 90-95/minute (normally I am with a pulse of 45-50/minute). This happens mostly in the afternoon following a day's activity and after a full meal. Also, if I make an exceptional effort such as quickly climbing stairs or making a quick uphill walk. I wonder what else may cause such symptoms and whether there is a way to rule out the HCM as the cause of it and put the finger on the real cause.

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Replies to "Hi Colleen, Thank you so much for your welcome and links for more info. I am..."

Hello oferb69,
Welcome to the HCM group. We are not here because we wanted to be, but still it feels good to be in touch with others who may share a lot of your symptoms, concerns and experiences.
I had a septal myectomy and papillary myectomy at the Mayo in Rochester two years ago. Before I had the surgery, I was plagued by the strangest symptoms that I could not understand. I hiked our mountains (8,000 to 10,000 ft elevation) ballroom/swing dance lessons for ten years, walked/ran 6 miles each day. Rode a Harley. And slowly I noticed I was having trouble with chest pain and shortness of breath. Even doing laundry became more than a 'chore' but I would get tachycardia from the least little thing. I also noticed that on the occassional dietary indiscretion, like biscuits and gravy/hashbrowns/bacon (and these were not typical meals for me) I would suffer from terrible tachycardia, felt 'head rushes', tightness in my neck. There were good days, when I thought I was fine. There were other days I knew something was wrong. It seemed to progress over time. My heart would beat so hard, the bed would shake at night. I was misdiagnosed for several years, and finally, when my FP said my heart murmur was a grade 5/6 he insisted the cardiologist look again for something that was eluding him from his diagnosis of mitral valve prolapse. I got short of breath/tachycardia just walking on a gentle slope. I was told to drink more water, that I was just dehydrated. Not until I got to the Mayo Clinic were they able to diagnose my condition, HOCM, and told me I needed surgery. You sound healthy. You sound like you want to learn more about this condition. The answer to the 'why now' question is standard: because it just happens that way. In my opinion, depending on your location, a lot of cardiologist do not see this diagnosis in their practice very often, and can miss it completely or underestimate it's potential for life changing symptoms. Surgery is not done in every case, medications may or may not help in some cases. Treatment is based on each person and their circumstances. From what I know there is no 'cure', as it seems to be mostly a congenital heart condition. The cardiologist I saw at the Mayo was able to interpret the echo/lab/xrays and by asking questions not only gave me an answer as to why I felt like this, but how it can progress or even cause sudden death. That was a wake up call!
You are not alone, there are many on this site who have walked this same road. I felt so much comfort being able to ask questions and have folks answer me. Feel free to ask me anything you can think of...I will be happy to share my experience with you. It's scary to learn you have this, but having good information is the best plan. Happy New Year, and best wishes.