Hitting a wall with my HCM care

I am so glad that Connect has been a good resource for you and has helped you by providing insight and experience.
HOCM/HCM is a tough one to take when you first find out you have it, and Connect can help because we all have 'been there'.
Has anyone else in your family been diagnosed with this condition? Or have you been genetically tested?
It's usually always genetic.
You have a 50/50 chance of giving to your children if you have any.

I had tge same experience in Texas. The cardiologist stated "when your mitral valve gets bad we will replace it". I like to be proactive to delay procedures. Mayo has been great!

Sorry to hear your situation!
Im not real familiar with non obstructive but do know on obstructive that diuretics can make symptoms worse!
So caffeine is a big one, eating big meals is another one that i was told sends signals for your veins and arteries to dialate to help digest! Alcohol is another! And of course certain medications that have diuretics can cause your symptoms!
Hope you get the right answers to help with your symptoms

You might want to take a look at this article from the NIH. (Nation institutes of Health).

Cardiomyopathy is estimated to affect about 1 in 500 adults, and many cases may go undiagnosed. While it can occur at any age, sex, or race, certain types are more common in specific populations, like dilated cardiomyopathy in Black people and males. Hypertrophic cardiomyopathy, the most common inherited type, is estimated to affect 1 in 500 people worldwide.

Research consistently demonstrates that Black individuals tend to have lower serum selenium concentrations compared to their White counterparts.

Selenium supplementation might offer benefits for individuals with cardiomyopathy, particularly if they have a selenium deficiency. Studies have shown that selenium deficiency can contribute to dilated cardiomyopathy, and in some cases, selenium supplementation has been found to reverse the condition. However, more research is needed to fully understand the role of selenium in preventing and treating cardiomyopathy, especially in cases where deficiency is not present.

Selenium is an essential micronutrient that plays a role in various bodily functions, including heart health.

A condition called Keshan disease, a form of dilated cardiomyopathy, is linked to selenium deficiency.

In Keshan disease, selenium supplementation has been shown to mitigate clinical manifestations and even reverse the condition in some cases.

Some clinical trials have shown improvements in clinical symptoms, left ventricular ejection fraction, and lipid profile with selenium supplementation in heart failure patients.

Not sure why medical professionals don't consider these findings.

Keshan disease:
In regions with very low selenium intake, a severe condition called Keshan disease (cardiomyopathy) can occur, according to the National Institutes of Health.

Globally, an estimated 500 million people may be deficient in selenium.

@tommy901, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

"A Rare Cause of Cardiomyopathy: A Case of Selenium Deficiency Causing Severe Cardiomyopathy that Improved on Supplementation"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC5659335/

Thanks for the insertion. I would never place any spam here on this site. But I understand. Have a great day.

I urge you to get a second opinion. I was told by my cardiologist that I was too old. Later I found out what he really said in his report was that they could not do TAVR because of the Hypertrophic cardiomyopathy . I accepted I was too old for a while and then my good sense came back.
The Mayo Clinic Jacksonville is 5 miles from my house and I had never gone there. Last month I had the alcohol septal ablation. Later I will have TAVR .
Dr. Peter Pollak did the procedure And so far, it’s been successful.
Dr. Basar Sareyyupoglu at Mayo Jacksonville does an alternative to Traditional open-heart surgery by getting to the heart through the rib cage.
Mayo Jacksonville is close to many good places to stay and it’s not far from the ocean so you might consider coming down here and getting an evaluation.
It seems to me you’re suffering way too much.
The Alcohol septal ablation is done on older people. I’m 86 so I qualified.

@awest8
I was screening nHCM and came across your discussion. Like you not much has helped with symptoms no matter the medications. I hope this reaches you.

One over the counter help that Dr Lerman prescribed from Mayo was 2gm L Arginine. He said to eventually go to 4gm per day which I do, 2gm morning and 2gm in the evening.It provides some relief from the angina along with beta blocker and calcium channel blocker.