r/HypertrophicCM

Hi everyone! I have HCM and an ICD and I’m looking into weight loss medications, but I’m nervous about possible heart side effects.

Has anyone here with HCM and/or an ICD tried any weight loss meds (GLP-1s like Wegovy, Zepbound, Ozempic, etc. or anything else)? What are you taking, and did you notice any heart-related side effects like increased heart rate, palpitations, arrhythmias, chest pain, dizziness, or ICD issues/shocks?

Would love to hear your experiences — good or bad. Thanks so much 💛

Septal Myectomy scheduled for tomorrow!
I am 19(M) and i am so ready to be able to do so much more after the surgery, right now I can’t even go up a flight of stairs without being winded, I’m hoping this will get rid of most of my obstruction. Of course I am scared but I am in good hands at danger heart and vascular in Charlotte NC!

Any Hcm patients here... need help..

Im M45.. diagnosed with hcm around 10 years ago..im taking mavacam since 3 Month's.. super expensive...but doctor said I don't have any options left as surgery is impossible in my case..have met top doctors..but not been really helpful.. please people..hive me suggestion

My people, I was diagnosed with hcm at 25, 33mm normal gradient and EF but significant fibrosis. I was asymptomatic until 39, I’m 41 now. Actually that’s not true, I got dizzy upon standing and felt my heart pounding almost all the time but I thought everyone did.
Around 39 I started having mild swelling in my lower legs from time to time- usually when I didn’t get enough sleep and had to be standing all day. It’s gotten worse over the last year. My dr put me on 20mg lasix which helped for a bit. Then suddenly my gradient went from 24 to 59. For some reason I wasn’t started on mavacamten right away but my dr (who is the head of a center of excellence hcm program) added metoprolol and jardiance and upped the lasix to 40mg.
After this, I was randomly hospitalized because I got a piece of food stuck in my throat, could not swallow it. Embarrassing but labs showed my potassium was very low. I mentioned it to my dr, and asked if we should be monitoring my electrolytes. I was brushed aside.
About a month later while standing in my mothers kitchen I passed out and had an episode of convulsive syncope- where you pass out and look like you’re having a seizure. I was terrified, thought I had just lucked out ( I had a defibrillator but the explant warning went off a week before my 75yo mother had a liver transplant, I couldn’t leave her side for literally almost a year because there was no one else to care for her. my drs warned me my defib likely wouldn’t be avle to provide ample therapy if I had an event so I was basically without backup ay this time)
I went to a different hospital than the one my usual drs were at and learned ny gradient had jumped to almost 150. I also learned that my potassium was once again extremely low and that it was due to the lasix. Apparently in hcm, you have to be really careful with diuretics because they reduce blood volume which affects how hard the heart has to work to get blood where it needs to go and this worsens obstruction.
My dr insisted I be seen by a neurologist because I must have a seizure condition. This was ruled out. I was put on mavacamten, gradient came down to 20, ef 60.

I’m only on 20mg of lasix now and I end up with swelling every day. Despite the mavacamten eliminating shortness of breath, chest pain and palpitations, the swelling and fluid are preventing me from living my life. I can’t not wear compression socks, it’s about to be 90-100 degrees daily. I can’t wear shoes comfortably, i can’t button pants or tops anymore due to fluid in my abdomen so I’m just no longer wearing any thing but sweatpants and never leaving the house. My feet and ankles and shins and knees are in pain if I have to stand for more than a couple hours. I walk in my house and up and down the stairs (I make myself do 50-100 flights of stairs a day) I’m 5’3” about 155lbs.

Why isn’t my dr taking this seriously? What can I do? If this is the best it’s going to get.. I’ll be looking into death with dignity.

Oh eta: I’ve tried spiro, worst 3 months of my life. And I just had my transvenous icd removed and got an s-icd implanted at the beginning of April.

How worried should I be if I do end up having HOCM?

A few months ago I went to urgent care with chest pounding tachycardia. They sent me to the ER. The ER had me follow up with a cardiologist through the VA.

They noticed a heart murmur. When I told them I've been experiencing tachycardia, lightheaded episodes, and nearly fainting after exertion or standing/laying, they ordered a blood workup, EKG, halter monitor and heart ultrasound. The EKG and HM mostly just showed a lot of tachycardia, but the ultrasound showed some swelling in my heart. So they ordered a stress test with more intense imaging.

3 cardiologists told me they think I have HOCM. They said part of my heart is swollen and there is thickening in one of the valves that's causing pressure problems and blood flow issues. That's why I'm having the symptoms I'm having.

They ordered a heart MRI at Yale and genetic testing with a specialist to be sure. In the meantime they told me to cut back on strenuous activity and they ordered me some metoprolol.

Is this a big deal? Should I be more concerned, or less concerned?

I was diagnosed with HCM and I am very scared. I am very young and fear it will progress to heart failure. Does anyone know the survival rate or what u could expect to live to, especially given I’m so young and have many years for it to progress. I’d love to hear other people’s stories.

I'm a 31 year old male, and have HCM after being diagnosed in 2025. I've been considering doing a half marathon (very fit) but not sure because the doc said to not do endurance or high intensity sports.

What's confusing is I've been extremely active since childhood (played most competitive sports, including soccer) and the diagnosis which only came last year.

Seeking any opinions or experiences on this.

I have hypertrophic obstructive cardiomyopathy. I’m a 24 year old Male. 5’9” 156 pounds. I mostly only have symptoms when working out like a rapid heart beat and shortness of breath, but I know those are also just normal to have when working out. I’m pretty constantly paranoid about my heart and having a sudden heart attack or something. Does anyone else have the same diagnosis and symptoms? Currently on 50mg of metoprolol. At what point do doctors recommend surgery? I guess I’m just asking for advice on how not to constantly fear randomly dropping dead

I have two variants: MYBPC3 (pathogenic) and VCL (uncertain).

Ive had multiple echos recently, ever since the gene testing. One was a valsalva echo which showed no obstruction.

I have left ventricular concentric hypertrophy of 1.2cm and a dilated left atrium of 4.0cm

Im waiting on an MRI to see if there was any signs of scarring etc. I was told 1.3cm would be diagnostic on echo, but that MRI is becoming the gold standard for diagnosis. Has anyone here been borderline on echo but the HCM was revealed on MRI?

I am fairly symptomatic. I do think I also have POTS, but have been told the HCM can mimic POTS. So idk. I have my MRI late next month, so I guess we'll see if I truly have HCM.

I am curious what people here use for optimal hydration. For basically 4 years I relied on plain water, coconut water and pedialyte daily for hydration. Unfortunately this raised my A1C deep into pre diabetic range. As a result, I switched to LMNT since it is 0 sugar. I was able to lose weight and lower my A1C but it is too much salt for someone unable to rigorously exercise like myself. 2000 MG of salt in a day is no joke. I’ve seen ads for nectar and other brands but I was just wondering what gave you all the best results?

Hello! My father was recently diagnosed with HCM. I'm 27 years old and generally healthy, active, and asymptomatic, but I'd like to get screened just in case. But before I do I'd like to have a life insurance policy in place, since I understand that if I do end up having HCM it could be impossible to secure afterwards. I had never even thought about life insurance before this, so I don't really know where to start or how to navigate this.

Has anyone else in this group faced this situation? I don't know how to find a reputable broker or a policy provider who can insure me fairly. I want to avoid applying to insurance companies willy-nilly, since I learned that if they reject me it can end up on my public MIB record and this could impact my rates with other providers, or my ability to even secure a policy with another provider. Any advice for companies, brokers, or relevant next steps? Thanks so much!