Posts by goldencobra16

Well, here we go again—another segment just dropped on American TV.

http://www.4hcm.org/newsroom/videos/213600.html

Thought I’d drop this here to shake things up—it’s a movie that actually makes sense of all this illness stuff (in English):

http://www.youtube.com/watch?v=0_PwYKvYt4g

Cheers! 😉

Same here... I tried that whole hot-cold water therapy thing, but honestly? It just doesn't work for me. Brrr.

I’m dealing with the exact same symptoms as Tiësto—the diagnosis is identical. I've been living with this condition for five or six years now. I spent some time at the Mayo Clinic back in the day, which taught me a hell of a lot about what I'm up against, and honestly, you just have to learn to live with it (there's no other choice). Tiësto, if you ever need any specifics or just want to talk shop, hit me up in my DMs. 👍Good luck.

Hey everyone!
It’s actually pretty cool to see people I don't even know checking in on me... THANKS, I’m genuinely surprised by the kindness here 😍

So, I ended up at the hospital... brain CT, EKG, blood work... everything came back "normal," which is great, except they still have zero clue what's actually going on

I tried taking some B12 vitamins and those circulation supplements you find at CVS... nothing worked. Absolutely nothing
After that, I basically decided to play doctor myself—did a deep dive on Google and convinced myself it was an inner ear infection. So, I started taking the only antibiotic I had lying around, amoxicillin (I usually take it as a preventative for bacterial endocarditis anyway), and honestly? I felt better. Was it the antibiotic or just luck? Who knows... but anyway, I felt fine for about two weeks before the whole thing started creeping back in. It's not as intense as before, but that balance issue is still there. Just... lingering. Hmm, who knows 🤷 I’ve decided to just stop all the pills for a bit and lie down for a few days. Maybe things will settle down if I just rest. I'll keep you guys posted 👍

Yeah, it’s been happening every single day for the last three years... I’ve got cardiomyopathy, a hereditary heart condition. I honestly think that’s why—about two to five times a day, my heart just skips a beat and then thumps hard against my chest. That’s really it. I don't take any medication; some of the top cardiologists in the world told me it’s perfectly fine and totally normal (I’ve consulted specialists in London, the US, and Germany)...

It’s uncomfortable, sure, but I try to just relax and not overthink it. Sometimes that helps, sometimes it doesn't...🤷

So, turns out I’m dealing with an equilibrium disorder instead of just standard vertigo... anyone here actually know anything about this?🙄

Thanks for getting back to me,

I got my shot over in Chicago about two or three weeks ago..
Now I’m stuck sitting here in the hospital—and even the doctors seem clueless about what's going on with me. I’ve got an MRI and a CT scan scheduled in two hours, so we'll just have to see where this goes... 🤷

? 😢

Anyone there?

I got my shots for tetanus, hepatitis A, and typhoid about two and a half weeks ago... and honestly, for the last few days, I’ve been feeling absolutely wiped out. It's getting to the point where I can barely walk—I feel totally disoriented, and my heart is racing like crazy. To make matters worse, I'm traveling through Southeast Asia right now and don't have anyone local to ask about this. Is it even possible that these symptoms are coming from the vaccines, or could it be something else entirely? Has anyone here dealt with anything similar? 😕😕🤷👎

Hey, steelhound12—good to see you jumping into this thread. Don't worry, I'll definitely be picking your brain once I have some actual questions for you 😉 anyway, I’m just relieved you’re doing okay now and that the surgery went smoothly 👍

So, I was digging around online and actually stumbled upon a website for an association for people living with HOCM (who would’ve thought we even had an organization like that here in the States?). The site is totally open to everyone—families, friends, us patients, or anyone else who wants to wrap their head around this constant struggle of a disease...

They even have a forum where I’ve already signed up 😁. It’s a good spot for us to vent when things get heavy, plus there's a ton of solid info on treatments and stuff
.
If anyone wants to check it out, the link is www.cardiomyopathy.org

It’s been quite a while now, and I’m finally starting to wrap my head around how to actually live with this condition. I wanted to ask—is septal myectomy even an option for someone with non-obstructive HOCM? If that's off the table, what other surgeries are we even looking at?
Also, just how "dangerous" is non-obstructive HOCM when you compare it to other types of cardiomyopathy or, you know, an actually healthy heart? 🙂

Raymond Campbell49 said:How can you say it doesn't exist? It absolutely does. Think of it this way: you have increased muscle mass on your left side, which essentially means the blood flow through that area is being restricted. Which doctor were you seeing for this? As for me, I'm currently facing a similar weight on my shoulders, having to weigh all the options regarding a surgical procedure for my son.

Man, it's been way too long... how did everything turn out? How's your son doing? What was the verdict after the catheterization?

Drop me a line when you can. Best,

I’m seeing with Professor Ernest in Washington, D.C. He’s one of the top cardiologists over at the Mayo Clinic... though he hasn't actually walked me through the specifics of any surgeries yet—I just know what I've gathered from digging through medical journals and various sites online.
According to him, I won't even need surgery for another 5 to 10 years.
Anyway, the guy is incredibly sharp. Most of the cardiologists I’ve seen across the US have pointed me directly to him.

Could you tell me what kind of surgery your son is looking at and where you guys are planning to go for it? Also, how are you handling the costs?

i

As far as I can tell, there just isn't a surgical fix for cardiomyopathy... unless you're looking at a heart transplant, which is obviously the last resort.
I’m also dealing with some issues with my aortic valves, so I'll have to go under the knife for that in a few years—hopefully, I can push that off as long as possible...

Please, let me know if you know of any alternative to a transplant—like some other kind of surgery or procedure...

Four years ago, everything changed. I used to get winded just from doing anything remotely strenuous—it felt like my heart was struggling to keep up—even though back then, I was an incredibly active athlete. Then came the military recruitment physical, and let’s just say the EKG results sent the doctors into a total frenzy. They immediately flagged me for a cardiologist, and now here I am... stuck in this constant loop of fear and uncertainty. I honestly don't know what to think, what to do, or how to even process this. Every single time my chest tightens—and it happens constantly, multiple times a day—I find myself instinctively reaching for my pulse, checking my neck, just desperate to make sure my heart is actually still beating. It’s absolutely traumatic. I try to push through it and just live my life, but man, it is exhausting. To top it all off, I just graduated college—a moment that should be a massive celebration—but instead, I’m just trying to survive this mental torture. So, yeah... that's where I'm at. Cheers.

So, I was recently diagnosed with HOCM—hypertrophic cardiomyopathy—which is basically a genetic issue with the heart muscle. Since this just hit my radar, I'm wondering if anyone else here is dealing with the exact same thing? How are you all actually managing it?