HCM-ers: Introduce yourself or just say hi

Hi, I am Sarah. I was diagnosed with Broken Heart Syndrome/Stress cardiomyopathy. That was last March. I was in the hospital for 5 days before they figured it out. At the same time, I experienced high BP. Like, 222/153, and have been to the ER many times. I thought high blood pressure was fairly easy to control. I also have A-Fib. Does anyone have the same diagnosis?

Hi I am in the UK and just been diagnosed with HCM

Hopefully your Cardiologist has diagnosed if you need an alcohol septal ablation. Also your family members need to be tested (echocardiogram) since this is a hereditary heart disease.
Best to you

Hello, not as yet but I will have scans yearly . Plan to have my children tested as my father died suddenly at 43 yrs old and now we understand the reason

Hello @marcl, and welcome to Mayo Clinic Connect. I am so glad you found this forum, and all the way from the United Kingdom too!
I'm sorry to hear that your father passed away at such a young age. That must have been a very difficult thing to have happen to you and your family.
You mention you were just diagnosed, as in recently. Did it take some time before they were able to diagnose you with HCM as the cause or did they know right away?
I ask, because so many of we HCM folks are misdiagnosed for years sometimes, and it's not until we have terrible symptoms of shortness of breath, chest pain, brain fog, dizziness and crazy fatigue a diagnosis is finally made.
Have you had a chance to poke around here on Connect? There is a ton of great information from members that is worth reading. Learning as much as you can about your condition will help you help your doctors help you!
Besides HCM, are you a physically active person?

Hi I guess I was lucky , being an avid cyclist and competed a few times at races I do about 3-5000 miles per year, I thought given my father passing I should get checked out. On the odd occasion when I was pushing hard with a HR of 190 it would go tacycardic to over 200 just for a few mins, so I decided to get tested with ultrasound and then MRI which confirmed it. Does the condition get worse over time? and also as it gets worse does the probability of sudden cardiac death get higher?
Kind regards, Marc

Whew! That's a lot of miles! So that answers my question about physical fitness...the answer is YES!
As much as I would like to answer your question, I am not a doctor, and I dare not pretend to be one! I can share only my story, and in sharing there may be some tidbits of information.
In my case, yes, it got worse and worse over the course of maybe four or five years. I am a big time walker/hiker, living in far Northern California, where we have some pretty big mountains surrounding us. I hiked at least once a week with with my good friend.
I noticed the higher in elevation I would be, the harder it became for me. My hiking buddy/friend would be standing up top watching me struggle. Stop. Hike. Struggle. Stop. Hike. It was so wild because I was so healthy. Or so I thought!
Over time I noticed my everyday six-mile walk was affected. There were times I would be so short of breath, even on flat ground, I would have to stop. Like a dozen times in a mile. I knew in my heart (pun intended) something was terribly wrong. Sadly, the local cardiologist in my town did not know what I had, and so I was diagnosed with about four different conditions over the years. None of which I had.
Fast forward. It got so bad, I was told I needed open heart surgery for a rare heart condition called Sub-aortic Membrane. I was referred to our local heart surgery. But I was concerned about the words "rare" and "local" surgeon and asked to be referred to two outside heart leaders.
I wound up at Mayo Clinic where I was correctly diagnosed with HOCM. It was obstructed. Therefore, the symptoms! Tada! I now knew what I really had.
But, it was scary too. I was told SCD, sudden cardiac death is a real thing with HOCM. That gets your attention.
To make this story even longer (!) I ended up having open heart surgery at the Mayo and have never looked back! I got my life back. I won't say it cured me...there is no cure for HCM, but I can hike. I can walk. I can do so many things I lost to ability to do with the severe obstruction.
Marc?
Only your doctor can share medical knowledge with you. But sadly HCM and HOCM are rather elusive and you may need to become your own best advocate. Learn as much as you can to help yourself. Have you had a chance to do any research? There is a lot of great info out there. Here's a great link from the Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here is another from an HCM organization:
https://4hcm.org
I don't want to scare you...but HCM should not be taken casually! But also, you need to live your best life. It sounds like perhaps your father was a victim of this disease...that should get your attention, right? You have come to the right place for sharing information.
Glad you're here!