HCM-ers: Introduce yourself or just say hi

I don't blame you for being nervous and scared about learning you have HOCM.
I was too, and feared I would die on some days when my symptoms were so bad.
You are doing the right thing by being seen by an specialist for sure. This is an elusive condition and can take years to be correctly diagnosed. I was 61 when I learned what I had and 62 when I had open heart surgery. I have never regretted or looked back after having the surgery. It saved my life and gave me back the ability to do what I had lost...like hiking and walking our local trail system every day.
I'm glad your appointment is so quick, that will hopefully help you know your options and get a plan going forward. Have you made a list of questions yet, or will you do that after reading up some more?

I have s few questions in my head, but will write them down before my appt on the 10th. I'm sure I will have more after doing more reading on the disease.

First time posting, but have been following the forum since my HOCM diagnosis a year ago. I have probably had symptoms throughout much of adulthood now that I look back. But out of nowhere I started having shortness of breath that kept me from doing things such as dancing, hiking or even walking. 6 months later it was confirmed. Doctor prescribed Verapamil, which seemed to work well enough that I started light exercise again. A few weeks later I left the Y and ended up in ICU with Cardiogenic shock/myocardial infarction. Since that time, I have meds changed, dosage increased and each time I feel like myself for up to 6 weeks, then right back to the same cycle. At my last appointment, my doctor, who is Camzyos certified, said that my next visit we would discuss Camzyos and/or surgery. This dosage of Metoprolol I was on lasted for about 6 weeks. Again, shortness of breath and can't take short walks. I am very open to surgery, but probably want to try Camzyos first. Trying to gather the facts.

I hear you !!
I have had a murmur my whole life several months ago I started to experience shortness of breathe on stairs ect. But I don't have any symptoms when I exercise at 100% involvement, none of my Doctors can't explain this
I have had a MRI of my heart with contrast and numerous echocardiograms showing a thickening of the left lower lobe my lower heart
I guess I'm at the point of not having anything thing done at this time other then going on collecting data on this condition
Has anyone out there had this same experience ?

I was diagnosed with HCM 8/22 but was not offered Camzyos until 5/23 and it has made a huge difference in my life. Continuing to also take Metropolol, Diltiazem, Clopiderol for blood pressure but still feel quite good.

Not exactly the same experience, frankkylerobinson, but some similarities. I'm 72, and was told I had a heart murmur when in my 20s or so. Active life bicycling, hiking, skiing, swimming, etc. Diagnosed with hcm about 5 years ago only because thickening of septum (heart muscle between left and right ventricle chambers) was detected by echocardiogram, then MRI, but I stayed active and felt no symptoms till last summer when shortness of breath hit. My cardiologist said that from my high gradients and other measurements he would have expected symptoms years earlier.

So now I've started mavacamten (Camzyos) (moderate results so far) and am considering septal myectomy surgery.

My point: It sounds like for you, if competent doctors are "just" collecting data at this stage that may be appropriate for now. Each case is different, and judgment calls need to be made about when, and how, to intervene.

I have confidence in my doctors, but since the summer I have found it helpful to ask a lot of questions and self-educate on line. Also, I got a second opinion from a recognized expert.

This site is great for hearing about others' experiences, and I recommend the HCM Association for a wealth of information. Here's their url: https://4hcm.org

Looking back, I too, feel this has been working on me a long time. Have had SOB, chest heaviness that extends into my back, and fatigue for a really long time. But has gotten much worse over the last year.

May I ask what your gradients are?

Hi,
I am so thankful for everyone on here sharing their information. I am 60 and was diagnosed with HOCM in 2018. My cardiologist said my body was managing it so no treatment necessary. Then, in 2022, he put me on Verapamil which made me very tired because I have historically have a low heart rate. Then, we tried 1/2 dose of metropolol, it helped until mid 2024, my GP said my heart murmur was stronger. I had also noticed more shortness of breath on stairs and just overall tiredness. So, I scheduled an ECHO in Sept, and my pressure gradient was 69 mmHg at rest and 100mmHg Valsava. I was recommended to go on Camzyos and began on Nov 9th at a 5mg dosage daily.
I have had two echos since and my last one was 18mmHg at rest and 69mmHg Valsava. My cardiologist said after the third, if things are going well, he would like to increase the dosage. After 4 weeks of being on, I do feel less stress in my chest and I feel like I am thinking clearer. I didn't have a lot of symptoms but the difference is noticeable. I do not quite feel totally better yet so I am hopeful, I have improvements are still coming.

I do wonder if it would be better to do surgery rather than a lifelong expensive drug so any feedback would be appreciated. Anything I should not do while on Camzyos?

A little more history, for several years, when I eat late at night, or have something with a lot of sugar content, I would have strong palpitations that would keep me up. Otherwise, I have been very healthy for my life, active, worked out, weight lifting, low bp, low cholesterol, etc.
Another question, does this cause tinnitus? I have high pitched ringing in my ears that seems to be getting worse. Any help from anyone with a similar situation, please share. Thank you

Sure, den01, I just looked at my gradient results back to 2021.

Remember, each case/patient is different, but for what it's worth:

I was asymptomatic until June 2024. Resting peak LVOT gradient was 173mmHg in April 2021 and 179mmHg in February 2023. I started on metoprolol in 2023, and tested 127mmHg in January 2024. (No results with Valsalva maneuver reported for these tests.)

Symptoms started (severe shortness of breath, sense of pressure in chest) in June 2024 at age 72. Tested 142mmHg in July 2024 (227mmHg with Valsalva). The SOB greatly improved after a few weeks, when a chest infection cleared up, but sense of pressure in chest persists to today.

I started on 5 mg mavacamten (Camzyos) in October 2024. Tested 61mmHg in November 2024 (123mmHg with Valsalva); 18mmHg in December 2024 (38mmHg with Valsalva); and 14mmHg in January 2025 (32mmHg with Valsalva).

So, the gradients are clearly going down, but I still feel pressure in chest, and SOB when doing even mild unaccustomed exercise (but no undue SOB when doing my usual aerobics or moderate weight-training in controlled circumstances at the gym).

I may be increasing to 10 mg mavacamten soon (meeting with doc later today). I am still strongly considering septal myectomy depending on how things go over the next few months.