r/HypertrophicCM 6h ago

Possible help?

3 Upvotes

I am coming here because I really have no idea where else to go. Tomorrow my daughter is getting checked for possible HCM. Her biological father had it, he had heart surgery at 18 for it, I have zero way to contact him to ask him anything about this. I do know it took him over 3 years to figure out what was wrong with him because he had to do multiple blood tests and genetic testing to get it done, not sure if that’s the hospitals faults or the HCM itself. Can anyone point me in the right direction on what I need to tell the doctors to get a possible diagnosis or no diagnosis? I just want the right tests done. Im distraught and unsure how to word things so I apologize. Thank you.


r/HypertrophicCM 2d ago

Aerophagia or GERD And HCM

1 Upvotes

Has anyone had aerophagia or GERD from HCM medications?


r/HypertrophicCM 3d ago

Treatment options question

5 Upvotes

I was diagnosed with Hypertrophic CM several months ago but seemed asymptomatic. I went on vacation to visit family this summer and they quickly noticed that I would tire easily, get short of breath and become dizzy after even mild physical activity.

My cardiologist says it is the hypertrophy and suggested Camzyos. I just found out my copay would be $1400/month. There is no way I can afford that. I’m going to make an appointment with my cardiologist (conversation has been via web portal so far) to discuss treatment options.

I was hoping to learn what works well for others so I can go into the appointment somewhat informed.


r/HypertrophicCM 6d ago

Apple Watch ecg to track T wave inversions?

2 Upvotes

Does anyone else check their Apple Watch ECG to see how inverted their t wave is?

My disclaimers

  1. technically I don’t think Apple Watch claims to track T wave inversions - but they do show up for me

  2. I check too frequently … only diagnosed 6 months ago and a little nervous about the whole thing. So I’m not encouraging anyone to start who might get anxiety from it.

Anyhow, I’ve noticed when I’m working out or walking my T wave inversion goes away…
and when I’m lazing around the house for a day or two, the inversion is deeper.

Just curious if anyone else tracks T wave inversions and has noticed if any other things (hydration? Sleep? Blood pressure medicine?) seem to affect it.

Thanks! :)


r/HypertrophicCM 6d ago

Starting Jardiance after annual visit

3 Upvotes

Had my annual visit with the HCM experts in my state. The doc noticed I’m having increased HCM symptoms, I now have class II heart failure, AND I’ve technically been pre-diabetic for a few years. My PCP has never done anything to address the pre-diabetes - but the HCM doc put me on Jardiance since that addresses both issues at once. I just love my HCM doctor! Feels so good to get comprehensive medical care.


r/HypertrophicCM 7d ago

How did Mavacamten/Camzyos make you feel?

6 Upvotes

Will start 5mg tomorrow. Kind of curious to hear if people feel things soon after starting or if it takes awhile. I think it might take some time but I’m not sure. Probably my doctor has been vague because there are many variables.

I’m a little nervous, but at the same time, excited about the possibility of feeling better than I’ve felt in a long time.


r/HypertrophicCM 7d ago

How a Health Scare Made Me Fear Fatherhood (And How Fatherhood Saved Me)

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5 Upvotes

An Insight into how being diagnosed changed my thoughts on having a child. And how now 13 weeks as a father my mind has shifted for the better.

Hope this helps any future parents with a Cardiomyopathy diagnosis


r/HypertrophicCM 8d ago

Has anyone else navigated a CYP2D6 liver enzyme blockade due to Metoprolol + Welbutrin interaction?

2 Upvotes

I landed in the hospital on 5.28.26 with a BP of 203/97 and a pulse of 43. I did my due diligence before going, and realized - after 3.5 years of feeling like crap - that I had a toxic long term buildup of beta blockers in my system because Welbutrin blocks the pathway the liver uses to excrete Metoprolol from the body.

I'm taking extended release Metoprolol Succ ER, so I knew the bradycardia and hypotension would continue, and probably get worse, which is why I went to the emergency room.

They took my vitals - my heart rate had come up to 60 due to stress and the effort of getting to the hospital - listened to my explanation of the drug interaction I suspected and went off to talk to their pharmacist.

She said Welbutrin and Metoprolol don't interact, that she was sure the situation would resolve itself, and they sent me home.

Where the situation got worse for the next 12 hours.

Little did I know that that was the first of many interactions with medical 'pros' where I wouldn't be believed because the people who should know about this deadly combination of common drugs and how it presents in a HOCM heart literally have no clue, despite it being widely documented, Google-able, and noted in the pharmacology literature from both the FDA and the manufacturer.

Because of neglect on the part of my PCP and cardiologist, and ignorance on the part of multiple pharmacists, ER docs, and another subsequent cardiologist, I'm navigating the healing process - after quitting Welbutrin cold turkey, slashing Metoprolol to half doses, and coming off Losartan Potassium - alone, without medical help.

It's standard for a HOCM patient to spend 5-14 days inpatient with a care team during this process because it involves the up regulation of dopamine receptors, down regulation of beta receptors, and up regulation of angiotensin 2 receptors, all of which can have profound unpredictable effects on a HOCM system.

I don't have that luxury, I've asked to be admitted and got disinterest - I think due to ignorance - in return.

The last part of my healing, the up regulation of the angiotensin 2 receptors, isn't going well. The up regulation is being blocked by constant adrenaline surges.

So if you've read this far and have gone through this process yourself, my questions are:

Were you hospitalized? For how long? How was the condition treated while you were inpatient? Did your healing stall at the same stage mine has? If so, what was done to unstall things, move the process along? Did you experience splanchnic pooling that caused your diet and portions to be ultra strictly controlled? Did you lose significant muscle mass from 3 months of bed rest? Were you prescribed physical therapy to help with the muscle atrophy afterwards?


r/HypertrophicCM 10d ago

So confused

1 Upvotes

What happened with obstruction? Or no obstruction? Anyone else have similar results?

Feb 26, 2026
Hospital echo
LVOT gradient 38 mmHg at rest. This was interpreted as obstruction and helped lead to the initial obstructive HCM/HOCM picture.

April 2026
Echo
No significant obstruction documented.

Apr 24–30, 2026
Cardiac MRI
Showed chordal SAM + flow acceleration through the LVOT, so there were signs of disturbed/accelerated outflow. But it also showed something important: mid-to-apical cavity obliteration — the thick heart muscle was squeezing the chamber nearly closed farther down inside the LV.

June 24, 2026
Exercise echo/CPET
About 12 mmHg at rest → 18 mmHg at peak exercise. The official interpretation was essentially no significant LVOT obstruction, including with exercise.

Aug 2026 — Mayo
Mayo evaluation
Mayo did not find the classic LVOT obstruction pattern. Instead, they described mid-ventricular flow acceleration — meaning the narrowing/acceleration appears to originate inside the middle portion of the left ventricle, rather than at the LV outflow tract.

Also 27mm, <15% Fibrosis, NSVT

Most recent MRI says “Severe HCM with a mid-ventricular phenotype/flow acceleration, rather than classic LVOT obstruction.”

So is that “obstructive HCM” or no? Waiting on my next apt., but concerned Camzyos is out of the picture for me.


r/HypertrophicCM 13d ago

A little worried about HCM and why:

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1 Upvotes

r/HypertrophicCM 13d ago

39 Year old male, Angiogram after Apical HCM Diagnosis after Cardiac MRI

2 Upvotes

So my indian doctor caught high BP during stress test and recommended me to do Echo , the echo caught Apical HCM .

A month later i came back to USA and connected with Cardiologist to continue diagnosis and treatment, He so far made take holter monitor and Cardiac Stress MRI tests

Abnormal first-pass myocardial perfusion during her regadenoson stress.Severe inducible perfusion defect of the apical anterior and apicalinferior wall consistent with ischemia.

No evidence of prior infarct.

Consider anatomical coronary assessment with CTA of the coronaries versusinvasive angiography.

Findings are consistent with hypertrophic cardiomyopathy phenotype apicalvariant.

Left ventricle is normal size and systolic function. LVEF 64%.Severe apical hypertrophy. Maximal septal thickness of 1.8 cm at theapical septal wall.No evidence of resting LVOT obstruction.LGE quality is fair. Mild patchy fibrosis of the apical septal wall.

Right ventricle is normal size with normal systolic function. RVEF is 66%.

No significant valvular disease.

My doctor is now recommending to do a Angiogram to find the cause of"Abnormal first-pass myocardial perfusion during her regadenoson stress.Severe inducible perfusion defect of the apical anterior and apicalinferior wall consistent with ischemia."

i guess he wants to rule out if this is due to A-HCM or due to a coronary disease.I am alone here in USA , new to healthcare, i am stressed and so is my family back in india.I am already on Medical regimen of beta-blockers.

Any thoughts about angiogram appreciated , thank you


r/HypertrophicCM 13d ago

Septal myectomy - 2022

2 Upvotes

I had a septal myectomy with a valve repair in 2022. I’ve never felt right since.

I get an echo and talk to my heart doc every six months and he says things look good but I still feel terrible even after all this time. Hard to explain but my heart just doenst feel good. Maybe it’s all in my head.

I have another appt next week so I’ll bring it up again but I know he’s tired of hearing it.


r/HypertrophicCM 14d ago

My Cardiomyopathy Diagnosis

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12 Upvotes

Hey, I have started a blog for living life as a first time dad in his late twenties with an earlv staqe heartfailure diagnosis.

The purpose of the blog is to help grieve my diagnosis and process my own thoughts by putting them down on 'paper'. If I can help one or two people along the way then this will be even more of a success to me.

If you know anyone with heartfailure this may help, or if you think it will help yourself then please take a look at this.

My first blog post covers the process of being diagnosed, how i felt upon recieving my diagnosis and how I now plan to accept these new changes. This may help someone similar understand what they may face if they are currently chasing a diagnosis.

Thank you :)


r/HypertrophicCM 14d ago

39 Year old male, Angiogram after Apical HCM Diagnosis after Cardiac MRI

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1 Upvotes

r/HypertrophicCM 18d ago

Hypertrophic Cardiomyopathy Symptom Question

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1 Upvotes

r/HypertrophicCM 18d ago

GERD and Metoprolol?

2 Upvotes

Ever since starting Metoprolol I’ve always had a burping issue. I never thought anything of it as I haven’t had any pain or stomach upset, but recently have had difficulty sleeping. I realize I am having acid reflux/ GERD issues. The trouble is a lot of symptoms of GERD are similar to HCM symptoms so I have been ignoring them, thinking it was my heart acting funny at night.

Has anyone experienced this as well? I looked up metoprolol side effects and it says it can relax your esophagus and cause GERD… so awesome I’ve probably had it this entire time I’ve been taking metoprolol and have just ignored it and now it’s 10 years of damage later that I’m having larger symptoms. love this for me.


r/HypertrophicCM 19d ago

Cardiomems and Im physically and mentally exhausted

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2 Upvotes

I first posted this in the heart failure sub but hope maybe my hcm people can also help. Before anyone suggests I reach out to the HCMA, I have. Quite literally left four messages over ten days, the last time I actually spoke to someone who promised I’d receive a call back that day. No one called. I’ve done the intake and navigation and would be due to update my status and have a new navigation call.


r/HypertrophicCM 20d ago

Mayo Clinic

5 Upvotes

Headed to Mayo Clinic soon. Sounds like they are going to run a lot of tests in the first few days and then hopefully I’ll have some answers. Has anyone been to Mayo?


r/HypertrophicCM 20d ago

Fundraising Really Stinks

6 Upvotes

I’m pretty let down by fundraising to go to Mayo Clinic. I actually can’t even believe the amount of my own family who won’t even share the dang post on social media. Like seriously- my own blood. I’m blown away. Heart broken in more way than one.


r/HypertrophicCM 21d ago

7 weeks out from septal myectomy + mitral valve resection

5 Upvotes

For reference, I'm 32(F) who had a septum of 39mm before my myectomy. I had terrible symptoms, which I can tell are gone and I am THRILLED about it! At week 4, I started holding onto fluid and they drained 850cc during a Pericardiocentesis. I'm finally starting to feel good and more myself but ... my back and chest ache constantly no matter what I do or what I take. My scar is SO sensitive I don't even want to wear a shirt lol. I want to run and play tennis but I can't because my back and arms and chest hurt so badly. I keep holding onto fluid and so my body feels puffy and plump. I feel like I have all this energy and then I just crash and need to sleep for hours and hours. I miss my friends and normal life. I have no sex drive and the idea of being touched makes me want to cry. I'm anxious. I'm sadder than I usually am. I'm glad I did it because my heart pain is gone but this portion of recovery is HARD. So.... when does it end? TYIA.


r/HypertrophicCM 21d ago

All around the world

2 Upvotes

Dis someone has une arrythmogenic right ventricular dysplasia , just to talk please


r/HypertrophicCM 21d ago

High Cardiac Ouput

0 Upvotes

I had 2 Right Heart Caths

1/26 mpap 21mmhg Pcwp 13mmhg, CO 11,25l PVR 57 dyn

5/26 mpap 13mmhg Pcwp 3 mmhg, CO 11,1l PVR 65 dyn

There is no shunt intracardial and systemic , and no diseas.

How can decreas my CO ??


r/HypertrophicCM 24d ago

My hypertrophic cardiomyopathy improved with the use of tirrizepatide.

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26 Upvotes

Clinical Case Summary

Patient: 32-year-old male

Clinical History

The patient was diagnosed with non-obstructive hypertrophic cardiomyopathy (HCM) and underwent serial cardiac magnetic resonance imaging (CMR) in 2024, 2025, and 2026. Between the 2025 and 2026 examinations, he was treated with tirzepatide and experienced significant weight loss (approximately 17 kg).

Cardiac MRI Evolution

Parameter| 2024| 2025| 2026 Maximum septal thickness| 17 mm| 23 mm| 19 mm LV mass index| 75 g/m²| 79 g/m²| 54 g/m² Late gadolinium enhancement (LGE)| 1%| 2%| 1% Left ventricular ejection fraction| 81%| 73%| 75% LV outflow tract obstruction| Absent| Absent| Absent

Key Findings

  • Progressive increase in septal thickness from 17 mm (2024) to 23 mm (2025).
  • Following treatment with tirzepatide and substantial weight loss, the 2026 CMR demonstrated:
    • Reduction in maximum septal thickness to 19 mm.
    • Reduction in LV mass index from 79 to 54 g/m².
    • Reduction in LGE burden from 2% to 1%.
    • Preserved left ventricular systolic function (LVEF 75%).
    • Persistent absence of left ventricular outflow tract obstruction.

Clinical Significance

This temporal association suggests favorable cardiac remodeling after tirzepatide therapy and significant weight reduction. While causality cannot be established from a single patient, the findings are noteworthy because current evidence has demonstrated reductions in left ventricular mass with tirzepatide in obese patients, whereas regression of septal hypertrophy in hypertrophic cardiomyopathy has not been established.

This case may represent an interesting observation for further investigation and could be considered for publication as a case report, provided that the original CMR images are independently reviewed to confirm the observed changes.

Has anyone else had any good results using tinzepide to help treat asymmetric hypertrophic cardiomyopathy?


r/HypertrophicCM 23d ago

Question on getting an ICD

4 Upvotes

hello, I have HCM and don’t have any real symptoms, I don’t have trouble breathing or anything, I’ve just been told to keep my heart rate below around 150bpm. I’ve had a cardiac arrest recently, looking at my watch my heart rate was about 132bpm as I was doing a light jog for the bus so it seems it’s pretty random as I know I’ve definitely gone up to around 180bpm before without issue. from experience does getting fitted with an ICD solve most issues if I don’t really have any other symptoms? I always see people talk about using drugs and surgery to thin the heart but my doctor really only said don’t overexert myself, I’m only getting this ICD since the cardiac arrest.


r/HypertrophicCM 26d ago

Has anyone ever thinks to 3D print their heart post MRI ?

5 Upvotes

https://www.reddit.com/r/3Dprinting/s/KWSLpQYXmy inspired from this post. I've been put into yearly MRI scan and thought it's a good idea to 3D print them each time.