Could it be HCM?

Hello @cnow,
Welcome to Mayo Clinic Connect. It looks like you posted earlier about heart rhythm issues as well. Sounds like your story is coming together a little more clearly now after your echo. You mention you have an appointment on Monday, which I assume you mean today Monday August 11.
I hope you get your answers during that visit.
As you can probably guess, there is no real cookie cutter treatment for each person...we are all so different. Protocols exist for various treatments of HCM and the obstructive version of HCM fondly referred to HOCM.
You will undoubtedly be enlightened on the various choices going forward after meeting with the cardiologist.
HCM is a sneaky condition. It mimics so many different heart conditions and can be elusive.
Sounds like you at least are headed in the right direction.
There may be more testing you will go through to get the definitive diagnosis of HCM, such as a cardiac MRI, blood work, chest xray and more!
Hang in there and let the process unfold naturally. Be open minded and accepting of treatment options...especially if that information is coming from the Mayo Clinic. They are world leaders in treating HCM. The last resort is open heart surgery, not the first resort!

PS: There is no "Fix" for HCM. It's a life-long commitment to a most likely genetic disease you inherited.
Will you come back and let us know what you learned at your appointment today?

Why would open-heart be last resort? I will examine options but not a proponent of throwing meds at symptoms

@cnow, I totally agree with you about "throwing meds at symptoms" instead of "fixing" the root cause.
Unfortunately, with a genetic condition being the root cause of HCM, there is no fix.
It is managed by meds to control symptoms. You can't cure a genetic disease.
Open heart surgery is the last result, and done when there is a severe obstruction of the LVOT.
It sounds like you are only in the beginning stages of learning what you may or may not have.
I hope you get some answers soon.
It's no fun wondering what in the world is wrong with you!

I am so frustrated right now. Just back from cardiologist. Evidently the results of my holster monitor were not significant. The results of my echo, although there were some
Irregularities, he isn’t worried. He did say I could do a stress test with echo but he really doesn’t think it is anything cardio. Going to head home and cry in my wine as I still have symptoms and no answers after visits to three specialities and lots and lots of tests

I will get a glass of wine and join you. Very seriously though, your frustration is well warranted and you want to get to the bottom of this so that you can get it treated. Debra, helpful as always, has given you beginning information about HCM. Do read the explanation on the Mayo Clinic website. https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 if you have not done so. I am unclear, what prompted you to have an echocardiogram and to wear a Holter in the first place?

I wore them because neurology then cardiology ordered those tests. I started this journey with nephrology hypertension because I had two TIAs in July. They did a series of test then sent me to neurology who did tests that resulted in me having to say into this week for cardiology tests and assessments. And still nothing. Upon reading the clinical notes from cardiology it seems that the only reason he ordered the stress test is to insure me that I’m okay

It looks like your doctors cannot pinpoint exactly what is causing your symptoms but are using various tests to rule out possibilities. The art of medicine - not an exact science! It's no wonder because we are all so different! Way back about 20 years ago, my bloodwork showed that one reading on my kidney function was "off" and that was about the time I was diagnosed with HCM. It was around 20 years before I needed surgery, meanwhile I was prescribed a blood pressure medication and told to eliminate as much sodium from my diet as possible because that reading had increased. As I was told, the blood supply and high blood pressure affects the proper functioning of other organs. Wishing you success in getting to the bottom of this.

Iwas diagnosed at age 80 and for 3 yrs have been on camzyos
Wonderful solution. Dr and pharmcist monitor closely and i've gone for
m lowest dosage to highest. One pill a day and i continue to function. At 83 I'm thankful.

I would like to share my experience with you regarding Camzyos for HCOM. I am hesitant to be on any medication. Having declared that, I must tell you that Camzyos has changed my life. "Throwing medication" called Camzyos at my HCOM has allowed me to maintain an active life and control my heart symptoms. One cardiologist told me it was the answer to not having an open heart surgery. I was born with HCOM and mitral valve regurgitation so the "root" cause can't be addressed. I am so grateful for the way I feel and can "live" my life by simply taking Camzyos. I am taking the maximum dose since I have severe HCOM, but you may be able to take a very small dose and live an active life. I encourage you to keep the possibility of taking Camzyos in your "tool belt" since it is an amazing option. Good luck to you as you explore your options and read this blog to gather facts and hear the stories of people on this journey. JOY!

I would have a stress test and ECHO if I were you. Information is power and my experience with wearing a Holter heart monitor has never been informative. Nothing unusual is ever captured on that testing for me! Super frustrating since I have two heart issues and you think information would be easily collected wearing a holter.