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What I've written here is longer than I intended. So sorry about that. Thanks in advance to anyone who gets through it.
For those with HCM, do my symptoms all combined sound familiar to you?
Over a year ago, I started having uncontrollable deep breathing while sitting and standing. It's every day. It stops when I lie down and sleep, then starts again at some point the next day, and continues until I lie down again.
When I mentioned it to my doctor, he said, "It's probably just stess," so I've convinced myself he's probably right. Despite this, I occasionally look online for an explanation because the breathing gets annoying and sometimes painful.
Just today, I read about HCM for the first time. Until now, I hadn't found anything that could cause the strange breathing. As I read the list of symptoms, I was surprised by how many matched--not just the breathing. They're all things that I've convinced myself are each "just one of those things." I haven't considered that they could be related in any way. Now I am beginning to wonder yet hoping that I'm overreacting.
I am currently in my 50s and when I was young, I had a mysterious heart issue. Ever since then, I've had bouts of chest pain. It makes me feel like if I breath too deeply, something is going to burst. With any exercise, and sometimes at rest my heart rate is high to very high with occasional palpitations, followed by extreme exhaustion. As of about 7 years ago, I sometimes pass out after a work out. At 19 years of age, I had a stress test, because I was concerned about my heart rate and exhaustion. I was told that the test results showed that all was well, and that the hign bms just mean that I have a very strong heart. It sounded rediculous to me then and it sounds rediculous to me now, but they are the experts, right? After that, felt like an idiot for having worried about it in the first place, and found it painful to pay the $600 bill for nothing.
There isn't any family history that I'm aware of though both of my grown children started getting the same chest pains as teens.
Maybe I'm just scared because of what happened to me as a child.
At 10 years of age I had an extended hospitalization. There was never a definitive diagnosis. The best guess of the numerous specialists involved was that is was Coxsackie B virus. Among the many issues referenced in my medical records from that time, are ventricular hypertrophy with sinus tachycardia, endocarditis, and myocarditis.
I was fortunate that I got better and was able to resume a normal life, albeit with the ongoing and now recently added issues that I hope are each "just one of those things."
As I write, I know that I should at least bring this up with my doctor. I just worry that I will sound like a hypochondriac. I would rather hear it from some of you who know what the symptoms of HCM are really like.
Replies to "What I've written here is longer than I intended. So sorry about that. Thanks in advance..."
I had similar symptoms. I'd be driving, get out of my car and walk 10 ft. Short of breath and thought I was going to pass out. I blamed it on change of BP dropping and passed it off. My BP was so high one night I got admitted to hospital and had scans, MRI heart Cath. This is how they found the HOCM. I got genetic testing to find mine is hereditary. This frightened me , for my children and grand children. I've been taking camzyos 6 days now. I have a wonderful Dr. At Scott and White in Tx who specializes in HOCM. I can say I was scared with all med side effects and lifted it up to the Lord. At 66 I don't want to have open heart Sx. I continue to work so I decided to try the med. Only side effects so far is insomnia that I can tell. At this time in life I lift it all up to him. Please get checked and I will keep you in prayer
Hello @hopefullibrarian, I see you have posted to the Hypertrophic Cardiomyopathy support group, searching for information. Take a look at this, it may help you learn about this condition.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
It's been my experience that HCM (hypertrophic cardiomyopathy) is difficult to diagnose as the symptoms fit so many other garden variety heart conditions and other non-heart conditions as well. Each and every one of us is a unique individual, and we will not all have every symptom of HCM in common, but we do share many. Shortness of breath is one of the most common symptoms. More like feeling you need to gasp for air and can't get it. Like you ran up 7 flights of stairs wearing lead boots.
Mayo Connect is a place for members to share their stories with each other, but we can't diagnose or even guess what someone else's symptoms may mean for us. Did I even make sense? I think it's good to find a forum of people who share your same medical condition, and it sounds like you need further study and a definitive diagnosis, which you don't have yet. You need to be your own best advocate and never let the fear of sounding like a "hypochondriac" keep you from finding the truth. HCM is diagnosed by an echocardiogram various other tests, but takes a skilled cardiologist to know what they are looking for. This is why you can fall through the cracks for many years and be misdiagnosed. Your physician should be able to refer you to a cardiologist, I hope? Instead of wondering and worrying or trying to see if your symptoms fit HCM, I think your best option is to see your doctor, share your concerns with them and ask to be referred to a cardiologist, instead of hoping it's "just one of those things!" You have only one life here on earth and you are special and unique and need to be your own advocate. Do you have a good rapport with your doctor? Do you feel comfortable making an appointment to be referred to a cardiologist?
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I realize now that I just hijacked this thread. I probably should have started a new one.
@dkmennen5 I apologize. Your situation sounds like it's causing you a lot of distress, and understandably so. Having to wait to see a doctor when you're so concerned and not feeling well, makes it worse. I hope that you can see someone sooner than 2 weeks from now, and that you find out what's going on.