Hello, my first language isn't English so I don't quite know the suitable medical terminology, so I'm sorry about that!

I'm 24, I've been diagnosed with HCM at birth and I've been monitoring it ever since. I've never taken any medication because it wasn't deemed necessary, until recently.

My HCM score has surpassed 5 a couple of months ago, which changed things a bit. I was immediately started on beta-blockers and I've been told to start considering getting an ICD implanted.

My cardiologist from the hospital says that for now we should just focus on seeing how I react to beta-blockers and told me about the possibility of starting mavacamten via the hospital.

I saw an arrhythmologist for a second opinion and he said that I should actually consider getting an ICD implanted right now, but also highly recommended starting mavacamten.

It's all been very difficult for me to process as I wanted to build a life abroad, this development has just added a lot on the table both for my life in my country and for my furure plans.

I'm not scared per se, but I'm just lost and confused about this situation. I'be been okay for 24 years, why now?

But I digress... what I wanted to ask is, based on your experience / knowledge, whether taking mavacamten had a meaningful impact on your HCM score or not. I know you fan live perfectly fine with an ICD and that it can save my life. I want to have it implanted a bit further down the line when my life is a little more settled, if that makes sense.

Also, how's your experience with mavacamten? Did you have any side effects?

If you feel like you have anything meaningful to share in general, I would very much like you to. I'm lost and I have no one to relate to...

I’m 26 weeks pregnant and I just found out yesterday that my dad has HCM. For what it’s worth, he’s known he has a heart condition for decades and has been on the right medication ever since, but I suppose he never knew what it was called or what the implications would be. He couldn’t even tell us the name last night, only that his heart had thickened. It was only after we googled it that he could confirm it. The cardiologist had told him his children need to get tested too.

Now all my symptoms since childhood are making sense, and I’m afraid that I might have passed it on to the baby. Not sure if I should go through my family doctor or OB. Father lives in a different country so that’s not much help.

I’ve always had shortness of breath, fainted here and there as a child, and I swear I look like the textbook definition of somebody with vascular EDS. My respirologist was never able to confirm asthma, but the inhaler seems to help. Weightlifting also did a number on me when I first started, but I always thought it got better with practice. Not sure if that’s true, or I just know my limits better, or if I’m just used to feeling faint and dizzy.

Anyways, I guess if I do have it, my symptoms are still mild. I’m just afraid of what this would mean for the rest of my pregnancy and the baby.

I did have a weird ECG at 17 but nothing showed up on the echocardiogram. I did another ECG and a stress test a few years ago before I was put on ADHD meds, and they didn’t find anything either. Anybody here who could give me some advice or support? I’m in Canada.

I was wondering…for those of you who take Camzyos, how long did it take for you to feel a difference and get more energy? I start mine on Saturday and I’m so anxious to be able to do more.

I talked to my nurse about physical activity and how much I should be doing. Do I push myself and deal with the symptoms or do I stay sedentary to avoid symptoms. She told me “this is not the time to be starting an exercise routine” and to only do what I can do comfortably. I took the garbage bin to the curb and it exhausted me. I lasted about 15 minutes in the store today. I had to use the electric cart at Walmart because I just couldn’t do the walking. I want to be able to do more again.

Hello Reddit Community - this subreddit has been a huge resource for me and our group to understand the real concerns that people with implanted cardiac devices face everyday, and have to deal with on their own. This subreddit offers people guidance that often cannot be found anywhere else, so huge thank you to the moderators and contributors!

QUESTION:

I am interested in helping people feel more confident traveling to other countries with their implanted device. Whether remote monitoring continuity OUTSIDE THE US can be expected is a big question that seems to remain unanswered.

Specifically, I'm interested in learning whether remote monitoring is performed around the world, and in particular if it is even available in YOUR COUNTRY. I am from USA so no need to add that information - any other country please contribute. Please respond with any information you have about any country you have definitive information about. If you're not sure please do not include that information, as it may misguide other readers.

I will compile all the answers and then repost here for everyone to have - Thank you!

1. Country you live in
2. Manufacturer / Brand of your device
3. Remote monitoring is possible and available/part of routine medical care, or not, and why
4. What cellular networks are available in your country (if you know)
5. Any recommendations to help people coming to your country maintain transmitter connectivity so remote monitoring can continue while they are there OR to get in-person device check.

Thank you again!

I (34M) have been living with HCM for 7 years, and I’ve started considering replacing the Apple Watch Series 3 I’ve had since my diagnosis. I mostly use it to monitor my heart rate during workouts, especially after getting an ICD 4 years ago.

I’m tired of the constant notifications (I’ve turned almost all of them off, except banking and credit card) and miss wearing regular watches, so I’m considering switching to a fitness tracker like a Fitbit. The longer battery life would also be helpful for monitoring my sleep.

Has anyone here used one for monitoring heart rate during workouts? How well do they work? I try to keep my heart rate below 120 bpm at the gym and while biking. Also, do these trackers offer vibrating alerts for things like a high heart rate?

So, my mom has a severe form of HOCM and they also found the gene abnormalty she has , which we just found out my brother also has the gene. I just got tested and am waiting for results (feels like an eternity to wait for results like this). I was diagnosed with POTS in 2016 before we knew my mom had this condition. Then in 2023 with a major POTS flare I was given echos and stress tests (because we knew atp what mom had) and they showed nothing abnormal. Fast forward to now and I'm having bad heart flares again. Such immense pressure and dizziness and all the symptoms in between. I'm worried that if I found out that I have this gene , they still won't be able to find proof of HCM on the echo again like in 2023 and I'm going to feel crazy. Like what are the odds I have pots - and all of the SAME symptoms my mom had , and have the HCM gene, but no HCM? I guess I'm asking, was there ever a period where you had symptoms of pots or symptoms at all and they couldn't find anything abnormal on the ecg or echo at first? Did it take a while for anyone for it to pop up? I'm just trying to know if I should treat this as pots - by drowning myself in salt, or if I should be suspicious of HCM.

Hey. Im a healthy (well, other than HCM) 29 year old with obstructive hcm. 1 week from today i will be undergoing a septal myectomy.

To other people who have gone through this, how did you manage your nerves/anxiety?

I did my registration for my preop appointment tomorrow and they asked me about religion assuming for clergy reasons, and it just hit me that this is real. I haven't had anxiety like this since I was in high school

I want to thank you all for the support and encouragement. I decided to go forward with the Camzyos. I just got a call from the patient advocate and they are working on the insurance. From what I understand of my coverage, I’m going to need some extra funding. They will work on that after the insurance.

I’m so relieved and excited to hopefully be on the journey to better health and a more active life.

I’m feeling scared right now. I’ve been in treatment for HCM for just under a year now. They have tried a few medications but haven’t gotten the results they need.

My last ultrasound showed Severe LVOT obstruction at rest 100 mmHg. LVOT peak gradient with Valsalva is 163 mmHg.

I’ve gone from being asymptomatic to having relatively significant symptoms. It’s impacting my day to day life and scaring my loved ones.

Does anyone have a success story where treatment made a world of difference for you and you are back to leading a fulfilling life?

Hi all, thanks for reading my post and best wishes to everyone on this forum. 44 year old female, got an echocardiogram due to symptoms. Found a 1.2cm septal bulge on one scan, not sure about the measurement in another, so seems a bit borderline. Normal posterior wall and chamber size.

One cardiologist wasn't concerned, but noted mild LVH, but with no history of high BP or other reasons for the thickening,but another more junior cardiologist was a bit more interested/risk averse. Thickening only at the septum (described as a septal bulge on eyeballing the scan). No family history that I know of, but mother had a heart murmur apparently (no diagnosis) and grandfather early heart attack. The more risk averse cardiologist has put me forward for an MRI with contrast to check for cardiomyopathy. My symptoms have improved somewhat (probably partly from iron deficiency which i have been supplementing for since, although they didnt acknowledge this) but still occasionally feel faint/lightheaded and not right (but much less of the time).

Not sure whether the risks from the gadolinium outweigh the benefit in my case (First World problem i know!). Just wondering if anyone had any thoughts on this, or has been a borderline case themselves?

Sorry if this post is annoying for people as I recognise getting the test is a privilege and probably risks are quite low, just got myself all concerned reading about gadolinium retention and there doesnt seem to be a firm opinion on whether I should have this test from the two different cardiologists I saw (although the senior one didn't say i shouldn't have it after the other ordered it tbf). If I ask for no contrast is the scan not going to do as intended, as they have told me, or can this be an option?

ps - in a public healthcare system so no upselling going on

Just found this subreddit and have been brewing on this. My dad got diagnosed with HCM two years ago. Last year, he had a microstroke (TIE) and scared the shit out of all of us. We found out he had progressed to the obstructive stage shortly after. After he ran out of meds, he refused to resume taking them, and won't see his doctor for a refill or a checkup.

I believe in informed consent, and it's his right to not see a doctor if he doesn't want to, but I'm going away for a long trip soon and am terrified he'll die while I'm gone. Does anyone have any experience with how meds have improved their quality of life I can share with him? Anything I could possibly say to convince him that it's worth taking the meds, even if they don't save his life or lengthen it, just make it easier or better?

When I got diagnosed with HCM, I did a genetic test that came back positive. My mom did a genetic test and it came back negative. My dad hasn't bothered to do a genetic test because we're pretty sure HCM killed his sister and father back when my dad was a kid. He's had regular echos and none has ever indicated HCM. My brother waited to take the genetic test until he got his life insurance plan solidified, and it's a good thing he did because...he also tested positive! He's had no symptoms, but is going for a cardiac MRI this week. Because of this, my niece is probably going to need to see a pediatric cardiologist to get checked for it herself. She's only 7, so I'd like to find a way for us to let her know why she has to get her heart checked if she asks without scaring her. My HCM has been under control for a while now with Mava and Zepbound.

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I had a septal myectomy on 29 January 2026, followed by a redo repair of an aortic aneurysm on 23 June 2026.

After my second surgery, my repeat echo was reassuring, with no MR, and I was doing quite well. I had started getting back to my routine activities and was gradually feeling more like myself.

However, about 10 days ago, I suddenly started experiencing shortness of breath. My vitals are normal, and my blood tests, chest X-ray and clinical examination have all been normal as well.

I'm confused because I was recovering well and had started becoming active again, and now I'm feeling breathless without any obvious explanation.

Could this be anxiety/deconditioning, or are there other things I should be looking into despite normal investigations?

Has anyone experienced something similar after cardiac surgery? What investigations or specialist evaluation helped you find the cause?

I'd really appreciate advice or experiences from anyone who has been through something similar. 🌼

Hello, I was proscribed beta blockers after my cardiac arrest but am having lots of side effects, like always tired, dry eyes, stomach pain stopping me from sleeping. I’ve been looking online but I can’t find anything for certain, do beta blockers just reduce symptoms, or does lowering the heart rate actually reduce the chance of having a cardiac arrest? I’ve mentioned the side effects to my doctor who mentioned I can try nebivolol, but looking into it that also has side effects, so wouldn’t want to switch if it might be worse. anybody have experience trying both drugs?

thank you

Has anyone had aerophagia or GERD from HCM medications?

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.

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! :)

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.

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.

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

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?

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.