HCM-ers: Introduce yourself or just say hi

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

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

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

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?

Hello @dmarino4900 and welcome to Mayo Clinic Connect.
That is quite a story you shared here on Connect, no wonder you are frustrated and want to give up! I am so glad to hear that you already have done the most important thing you can...be your own best advocate.
Mayo Connect is all about patients helping each other and sharing stories and information. Have you had a chance to read any of the Camzyos groups stories? Here is the link to that:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I have found it is very typical for specialist to only give advice in their realm of specialty as this is their wheelhouse, so to speak. They are not comfortable offering treatment or advice in areas they don't know. You wouldn't want an electrician try to fix your plumbing and you wouldn't want a plumber to try and fix your ceiling fan! If you know what I mean...
Sometimes you have to go to more than one doctor to get to the real problem, and it certainly can be frustrating for sure. But it sounds like now you do know what is going on and it may take time to get all this under control. I'm sorry you have had this experience.
@jaymaysea is a Camzyos champion here on Connect and if you have not had a chance, take a look at some of her posts...she has had an interesting journey with HOCM (hypertrophic obstructive cardiomyopathy) and Camzyos and has a wonderful outlook about going through trials.
Are you feeling any better now? Are you able to be active like walking or able to do something you love?

I am 72 years old. About a year ago found out I had obstructive hypertrophic cardiomyopathy. A severe case. I am seeing a Dr who specializes in this. Had to go through a lot, in order to get approved for Camzyos. It is not an easy task to do. Especially when you are really sick. Finally started taking In February 2024. It was not easy getting the medicine. The support team and down to the doctors do not communicate. You have to be your own advocate. At first I felt better. But I started to get side effects. From headaches, nervousness, shaking, to my muscles becoming very weak and painful. Had trouble breathing, coughing I feel like I want to give up. Was told not the Camzyos. Went through many blood test and different doctors to find out I now have hyperthyroidism and possible Graves’ disease. I had been on thyroid medicine , since I was fifty. No problem until 3 months ago. Now this. Was taken off of thyroid medicine,still the same. I feel like I am a piece of meat on an assembly line. Doctors do not listen to there patients. Only will discuss what there specialty is. The pharmaceutical company only cares about 1 thing money. Shame on them. Be honest with the patients , work with them. The results came be better. I am not knocking the drug because there are results but also side effects no one once to talk about.

The two treatments, other than meds, that I was told about were either surgery or non invasive alcohol injection via an artery. Have you had either of those? I was told I wasn't a candidate for the alcohol treatment but surgery a year and a half ago seems to have worked for me. I'm hoping that result lasts.

I was diagnosed with HCM in 2019. I've never heard the term Apical but when I look it up it sounds like the same way my condition was described. I had surgery in March 2023.

Hi Val, it seems we have a few things in common. I have Apical HCM & live in England

Hi,
I regularly use Online Mayo Clinic for my health & medical info.
I have a long standing diagnosis with Apical HCM. I am highly symptomatic despite extensive treatments.