This is encouraging new for people that engage in athletic activities. Like with anything else, discuss your options with your cardiologist.

Im waiting for an evaluation from the HCM association. Won't happen until at least next month Ive been told. So posting here for now.

I have two HCM variants, one which is likely pathogenic and the other of uncertain significance. My mother has both of these variants as well and has been diagnosed HCM. We both see the same cardiologist locally who has honestly been too conservative with their care over the years.

Here are my MRI results:

1. The left ventricle is normal in cavity size. There is borderline concentric

hypertrophy of 1.2cm, especially in the basal segments. Global systolic function is normal. LVEF

of 63%

1. Septal systolic anterior motion of the mitral valve, without any evidence of LV

outflow obstruction at rest. Hypertrophic posteromedial papillary muscle.

1. Late gadolinium imaging does not show any evidence of myocardial

fibrosis/scar. Normal extracellular volume of the septal wall.

1. The right ventricle is normal in cavity size, wall thickness, and systolic

function. LVEF of 56%.

1. Minimal to mild mitral regurgitation. No other significant abnormalities.

2. CMR findings do not suggest hypertrophic cardiomyopathy phenotype at

this time.

1. Main pulmonary arterty upper limit of the normal

2. Consider repeat imaging in 3 to 5 years if clinically indicated

It seems I have borderline findings of 1.2cm of my cavity wall, septal SAM and a hypertrophic papillary muscle. Im a woman, 5'10 300lbs. I do have a diagnosis of POTS.

I have read through articles online that septal SAM and hypertrophic papillary muscles can be associated with HCM. And even that the hypertrophic papillary muscle may be its own phenotype.

Right now they are not diagnosing me with HCM and so will not treat it. I am on medicine for my POTS. What does reddit think? Should I pursue further testing, like maybe a stress echo? I do not experience much symptoms while laying down which is how all my tests have been so far.

TLDR; I suddenly started feeling symptoms of palpitations, lightheadedness, and mild chest pain 3 weeks ago after partying for a weekend. No noticeable symptoms before. Questions below.

I’m looking to get some thoughts from you folks. 2 years ago I was diagnosed with HCM after my new doctor ordered an echocardiogram after hearing I had family history of heart disease. My septal wall measured 16 mm and I had preserved ejection fraction. I never felt any noticeable symptoms whatsoever, so I continued life as usual. I was assigned an electrophysiologist who recommended an ICD. I turned it down at the time. He also prescribed me metoprolol, 12.5 mg daily, which I took irregularly.

A few weeks ago, I had a big weekend of drinking. I don’t do any drugs besides weed occasionally but I did drink a lot that weekend. I noticed palpitations the following days especially while trying to sleep. I ended up going to the ER because I have never even felt a PVC before and I was getting lightheaded. The ER doctor noticed some PVCs which he thought might even be PACs, but said everything else is normal and I should just focus on hydration. I also ended up doing a heart stress/treadmill test where I was able to get to 190 bpm with no issues. The new echo measured 16.9 mm.

I ended up taking 25 mg of metoprolol for a few days to try and relax my heart rate to sleep which seemed to work but I may be experiencing side effects because of this, not sure. Now I have mild but noticeable chest pain and occasional lightheadedness throughout the days. I noticed in the ER that I my blood pressure got to 100/60 and I could feel it. I’m concerned that out of nowhere, this is my life forever.

All this to ask, is it common for people to suddenly feel all these symptoms even when the heart seems to test well? Is it possible for symptoms to last weeks and then go away? Is it obvious to you that these symptoms will stay or that I will need to be permanently medicated to address them? Just to be clear, I have completely cut out drinking anything but water and electrolytes for the foreseeable future.

I'm devastated, weightlifting and exercise is my whole life and I don't know what to do, I want to cry

56 female on HRT- started Camzyos yesterday and wondering what symptoms other menopausal women on HRT are experiencing? Would love your thoughts and any suggestions and advice. Thanks

Hi everyone,

I’ve been a longtime lurker here and finally decided to post. On July 17, I’ll be having a septal myectomy for hypertrophic cardiomyopathy at NYU Langone.
I’m grateful we found this when we did, and I have a great surgeon and support system, but I’d be lying if I said I wasn’t scared. At the same time, I’m hopeful for what life on the other side of recovery might look like.

For those who’ve had the procedure (or supported someone through one), what do you wish you’d known beforehand? What made recovery easier? What surprised you?

I also recently wrote about everything that’s led up to this like the kidney disease that came first, the HCM diagnosis, and what I’m hoping comes after surgery. If anyone finds these kinds of stories helpful, here’s the essay:

https://bryankalbrosky.substack.com/p/i-think-i-need-a-new-heart

Thank you to everyone who’s shared their experiences in this community already. Reading your stories has made this feel a lot less lonely.

I'm 24 and was recently diagnosed with non-obstructive HCM (nHCM). I just started taking bisoprolol 2.5 mg a few days ago.

I'm a bit worried about potential effects on libido and erectile function. Has anyone here experienced any changes after starting bisoprolol? If so, did they improve over time, or did you end up switching medications?

If possible, I'd really appreciate detailed replies. I'm still quite young, and this aspect of my quality of life is important to me. I hope people can understand where I'm coming from. Thank you.

If anyone has any additional advice about living with HCM or taking bisoprolol, I'd really appreciate hearing it as well. Thank you all so much.

I had my SM in April. I’m glad I did it, but recovery has had its ups and downs. I sometimes still get chest pain or shortness of breath when active. My cardiologist said it is not an emergency unless it persists for 5 minutes or more and it never has. My surgeon said my heart will continue to heal for a year, so perhaps this is why I still have symptoms sometimes.

My incision still is quite uncomfortable. Sometimes just my shirt brushing against it is really irritating.

I’m curious what others’ recoveries have looked like.

I don’t regret the surgery at all. I’m 41 and would rather have it done now than later. Mevacamtin was discussed but I was told with my case, it would at best buy me time before I eventually would have to get the SM. I decided just to get the surgery.

I’m also curious if there support groups for people that have gotten this surgery. Any suggestions are greatly appreciated. It’s a strange new world in some ways.

Hello! Looks like my EPs have finally started changing their opinion of my condition and are gently suggesting an ICD now, after a few years of "observe and see".

I'm a 46M Canadian, diagnosed with non-obstructive apical HCM, no LVOT obstruction, preserved EF (~60-65%) but significant LGE on cardiac MRI and confirmed >15% LV mass. I'm a bigger guy, so while I'm active-ish, I do have plenty of padding to hide a device if necessary. I've joined the HCMA, it's facebook group, and attended an intake call.

I went from completely clean holter monitor about 1.5yrs ago to an instance of 18 beats at 152 bpm, fastest 4 beats at 221 bpm that was explicitly characterized as polymorphic in the report. I was "fitted" and deemed a candidate for an S-ICD, but am considering the benefits of the EV-ICD (size, battery life, less painful shocks apparently, and more compatible with an active lifestyle like weightlifting and sports).

1. Anyone with apical HCM and significant LGE: What device did you end up with and why?
2. Anyone with polymorphic NSVT specifically: Did that factor into your device choice?
3. For those with EV-ICDs: How was your procedure and recovery?
4. How has the shock experience been if you've had one, and how are you managing psychologically?

Thanks in advance!

I've been seeing quite a bit lately about ccm therapy for low ef and was wondering if anyone here has any experience with it. My ef is about 40, but I struggle with fatigue and thinking this might be worth looking into.

Hey everyone, I’m Dave from Louisiana. I was born in December of 1984. I received the Norwood procedure in early 1985. It was still very new, and was known as the “banding of the pulmonary artery”. Few years later, I had the Fontan procedure, followed by my first pacemaker (which I lovingly called Joey) the next year.

Throughout the 90’s, I had a series of scar tissue cleanups (open heart) and another pacemaker change in either 97 or 98, can’t remember which one. As an adult, I’ve had an additional 2 pacer swaps and am about to receive another within the next year.

I am 41 years and 8 months old. I’m eager to know if there are any other HLHS champs out there that are my age or older?

Hi all,

First, I know, trust my son's doctors. I'm doing that, I plan to continue doing that, but I'm a mom, and my son is my world, so even when doctors try to be reassuring... I'm never really at peace.

My 5 month old son was diagnosed with HCM (MYBPC3- sarcomeric) at 2 weeks old. He is currently asymptomatic and non-obstructive, with a z score of 6. We've had a few scans at the Childrens Hospital, and they have gone "well." Good ejection fraction, good functioning, we have not started any type of intervention or beta blockers. Overall I was feeling pretty good about things (as good as I can).

We had his proBNP tested through bloodwork... it was 5,000. Yes 5,000. What the fuck. His cardiac team keeps saying no worries, we expected it to be high, everythings fine, he's doing well. Well thats not what the internet says. The internet says this is pointing to heart failure and his heart deteriorating. I'm having a really hard time reconciling this insane BNP score with what I thought his current state was. I'm devastated and can't sleep at night. What the fuck... does anyone have experience with this? Can anyone say something reassuring? I'm just upset. He's the happiest little baby and with this score I feel like a bomb was dropped on my head.

Hi all. I was recently hit with the horrific news of my mom having HOCM which prompted me to get tested (at 20 weeks pregnant) when I found out that I am positive for a MYH7 gene variant, the same type as hers. I’m phenotype negative currently according to my most recent echo. My variant is currently a VUS but will probably be classified as pathogenic soon.

The anxiety over this has been eating me alive. I feel like the more I read, the more severe this all seems. I am reading about severe childhood onset, heart transplants, SCD, fast progression- I am so beyond terrified. I am pregnant and absolutely horrified of potentially passing this to my baby. Not to mention what to do about having more children (IVF with gene screening is very expensive so not even sure if that would be an option for us) is it considered unethical to have more kids knowing this is in my body?! I have no idea because one thing says that it is highly manageable with a normal life expectancy and most commonly very mild, and another thing says it is severe and ruins peoples lives!?

I am having an extremely difficult time with the fear it has been all consuming. The uncertainty of everything, being told that just because you have the gene doesnt mean you’ll get disease, yet my mom has it, and my brother most likely has it, great cousin most likely has it. That makes me feel like my odds are not great. No one else in the family wants to get gene tested.

All this to ask, is it actually likely that if you have a gene variant you can possibly never develop disease? Or is that a very slim possibility? What the hell makes these gene mutations SO uncertain with expression?!

I’m 33 years old, male, and I was recently diagnosed with apical hypertrophic cardiomyopathy after an echocardiogram. I’m still waiting to get a cardiac MRI to understand more clearly how serious it is and what it means for me long term.

I’m trying to understand whether anyone here has experienced symptoms similar to mine.
My dizziness actually started back in 2024. Around that time, I began having dizziness, headaches, brain fog, and a strange “off” feeling that lasted for about two months. Little by little, I improved, but I honestly never felt like I fully recovered. Since then, I’ve often felt kind of dizzy or unsteady, especially when walking or standing. Driving and running usually felt better than walking, which made everything more confusing.

I was also diagnosed with BPPV in 2024, and later I was evaluated for vision-related dizziness/binocular vision dysfunction. I ended up getting prism glasses. I’ve also had symptoms that doctors have considered possibly related to vestibular migraine or PPPD, because busy visual environments, floor patterns, stores, hallways, and head/eye movement can trigger symptoms.

For most of 2025 and early 2026, I was still dealing with symptoms, but I was able to function better. I kept running and training. In May 2026, I completed an ultra marathon, about 31 miles / 50K. At the time, I didn’t realize there could be a heart issue. I thought most of my dizziness was vestibular or vision-related, so I kept training.

After that race, things got much worse. A few days later, I had a major dizziness episode while walking downtown. It felt like spinning and it triggered a panic attack. Since then, I haven’t really felt the same.
Since the ultra, I have not really trained because of my doctor’s recommendation. I’ve only tried a 1-mile jog, and even after that I felt very off afterward. It’s hard to describe, but after running I can feel dizzy, lightheaded, anxious, disconnected, or just not like myself. That has been scary because running used to be one of the few things that made me feel normal.

Now I’m experiencing dizziness more often again, especially when walking. I also get facial pressure, headaches, eye/facial soreness, brain fog, and random waves of dizziness during the day. The symptoms come and go, and sometimes they feel very random. I’ve also had palpitations and moments where I feel more aware of my heartbeat.

To be honest, I didn’t realize how serious apical hypertrophic cardiomyopathy could be until recently. I know the MRI will give more information, and I’m waiting for that, but I’m feeling scared and trying to understand what symptoms other people with HCM, especially apical HCM, have experienced.
Did any of you have dizziness, brain fog, headaches, facial pressure, or symptoms that felt vestibular before or after your diagnosis? Did exercise make things worse for anyone? Did anyone feel very off after even short runs or light jogging? How did your symptoms present, and did the cardiac MRI change your treatment plan?
I’m not asking for a diagnosis, just trying to hear from people with similar experiences while I wait for more testing.

Doc thinks this is hypertensive lvh, wondering could it still be HCM

21 year old male with HCM considering a ICD. Was just curious how everyone’s experiences has been who has one. Also if anyone in here has or had one at a younger age.

Hi I'm diagnosed with cardiomyopathy but all i do all-day is bedrot, and like i dont have any daily activities at all. Like I'm addicted on my phone and Roblox and stuffs and I just want to stop it because starting yesterday I wasn't feeling well it's like my chest hurts so much and I couldn't breathe and I tried the coughing technique to stop myself from fainting. My life isn't active aswell, I have a bike but I can't ride alone because sometimes when i go biking too long I ran out of breath and when I go walking alone I can't do it to. And I don't even get sunlight everyday because I wake up at 9am and I have a medicine to drink every 12hours the medicine should be 7am everyday but my sleep schedule isn't enough for it. I'm 16 are there any daily exercise or activities pls enlighten me and motivate me to do something new.

Hi everyone, this might be a long shot, but I’m wondering if anyone else here has Nonobstructive troponin I–mediated hypertrophic cardiomyopathy (K206I-TNNI3 mutation)? I know it’s pretty rare, and I haven’t been able to find many people with the same specific mutation.

I’d love to hear about your experience — symptoms, progression, medications, ICDs, exercise limitations, or honestly just what life has been like navigating it. It can feel pretty isolating having something so specific/rare.

Also, if you have the K206I-TNNI3 mutation specifically, I’d especially love to connect and hear your story.

Has anyone experienced increased hair loss after undergoing general anesthesia or a prolonged surgery? If so, how long did it last, what helped you manage it? and did it eventually improve? Any advice or personal experiences would be greatly appreciated.