r/HypertrophicCM

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.

Has anyone had aerophagia or GERD from HCM medications?

Hey, I have started a blog for living life as a first time dad in his late twenties with an early stage 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 :)

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.

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! :)

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?

Hi. My wife has had HCM for more than 15 years. She recently hasn't been feeling well and after a trip to the ER and a couple nights in hospital she has been diagnosed with burned out HCM hear failure.

My emotions are all over the map right now. Optimist at times. Pessimistic at times.

For those that have been through this what should we expect? What questions should we ask? At this point the Dr's havent said much on long term prognosis. She does have an ICD already.

So my great grandmother had HCM which is the enlarging of your heart. This can cause cardiac arrest or other issues. Especially if you workout or exercise hard you can just drop dead because of it.

I got an echo done in March for PACs which showed no abnormalities of my heart and it’s structurally normal. Pretty happy that it is, I’m only 21 too. The thing is tho, knowing a family member especially blood related had this issue makes me concerned that down the road it’ll find its way to me.

My cardiologist said he isn’t worried about it since it didn’t show up on the echo but I’m talking future reference. Glad I don’t have it now but what will happen in a few years???

Thankfully my grandma lived a good long life and made it to 83, she died from other causes in 2013.

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.

And my mitral valve regurgitation has became moderate instead of mild - moderate

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.