1. < Hypertrophic Cardiomyopathy (HCM)

When should I be checked.

Posted by dkmennen5 @dkmennen5, Sep 9, 2023

Was tested for HCM in 2014 as is in family history. Not detected then. Having symptoms now, was seen by family Dr and appt made in two weeks. Not sure I should wait until then. Symptoms are felt every day, all hours awake. Not felt at rest.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Mentor
Debra, Volunteer Mentor | @karukgirl | Sep 9, 2023

Greetings and welcome to Mayo Connect @dkmennen5, you have discovered a wonderful place to learn more about your condition. This is a place to share with others just like you and the HCM community is an amazing group of folks. It sounds like from what you are saying, you were tested almost ten years ago, but nothing was detected? Was the testing a genetic test or an echo?
We are all so different, but there are many symptoms in common with each other as well with this disease. I'm glad to hear you have an appointment in two weeks. Only you can decide for yourself if that timeframe is too far out based on how you are feeling. Two weeks goes by pretty quick, so that is a good thing. Have you been diagnosed by the cardiologist already?
From my own personal experience, I remember the level of anxiety was pretty high when my heart was pounding, racing, I was short of breath and had chest pain. I used to fear that I would die suddenly! Anybody would be anxious, so I am not surprised you may have some stress with whatever symptoms you are experiencing.
I do hope that your cardiologist is up on HCM and HOCM, because that is super important. I would learn as much as you possibly can from reading others stories here and also there is a website, https://4hcm.org, that is full of great information. It is important that you learn as much as you can because this condition is often mistaken for a host of other heart issues and misdiagnosed for years sometimes. You may have to be your own best advocate when you finally do see the doctor. Make a list of your symptoms so you can share them at your appointment. Talk about how your symptoms impact your life. Share your anxiety with the doctor.
Again, only you get to decide if two weeks is too far out. It does go by really quick and will allow you to do some research in the meantime.
What symptoms are you experiencing, if I may ask? Who else in your family has had this? When did you start to notice something was not quite right with your heart?

REPLY
1 reply
shampoou | @shampoou | Sep 9, 2023
In reply to @karukgirl "Greetings and welcome to Mayo Connect @dkmennen5, you have discovered a wonderful place to learn more..." + (show)
@karukgirl

Greetings and welcome to Mayo Connect @dkmennen5, you have discovered a wonderful place to learn more about your condition. This is a place to share with others just like you and the HCM community is an amazing group of folks. It sounds like from what you are saying, you were tested almost ten years ago, but nothing was detected? Was the testing a genetic test or an echo?
We are all so different, but there are many symptoms in common with each other as well with this disease. I'm glad to hear you have an appointment in two weeks. Only you can decide for yourself if that timeframe is too far out based on how you are feeling. Two weeks goes by pretty quick, so that is a good thing. Have you been diagnosed by the cardiologist already?
From my own personal experience, I remember the level of anxiety was pretty high when my heart was pounding, racing, I was short of breath and had chest pain. I used to fear that I would die suddenly! Anybody would be anxious, so I am not surprised you may have some stress with whatever symptoms you are experiencing.
I do hope that your cardiologist is up on HCM and HOCM, because that is super important. I would learn as much as you possibly can from reading others stories here and also there is a website, https://4hcm.org, that is full of great information. It is important that you learn as much as you can because this condition is often mistaken for a host of other heart issues and misdiagnosed for years sometimes. You may have to be your own best advocate when you finally do see the doctor. Make a list of your symptoms so you can share them at your appointment. Talk about how your symptoms impact your life. Share your anxiety with the doctor.
Again, only you get to decide if two weeks is too far out. It does go by really quick and will allow you to do some research in the meantime.
What symptoms are you experiencing, if I may ask? Who else in your family has had this? When did you start to notice something was not quite right with your heart?

Jump to this post

Debra i juss read ur comment. Very good info, ty for sharing. May i ask what cured u of your symptoms that u spoke of? Since i have been on metropolol and diltiazam i have had abso no more light headedness. I had abso no s.o.b. since diagnosed in may 2023, however juss in the lass 2 weeks i am starting to notice some of that. I juss take it easy and dont push myself.
Also wanted to say that i was diagnosed with hocm after having the suggested echocardiogram. Then i was asked to get a cardio mri for confirmation...after doing the mri it was co firmed.

And yes u r so rite, 2 weeks goes by pretty quick.
Good luck to all

REPLY
daniel777 | @daniel777 | Sep 10, 2023

Myocardial bridging (MB) is a congenital variant in which a segment of a coronary artery follows an atypical intramural course under a “bridge” of myocardium and is notably common in hypertrophic cardiomyopathy (HCM). If and when you have a heart cath you need to rule this out.

REPLY
hopefullibrarian | @hopefullibrarian | Oct 21, 2023

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.

REPLY
3 replies
hopefullibrarian | @hopefullibrarian | Oct 21, 2023
In reply to @hopefullibrarian "What I've written here is longer than I intended. So sorry about that. Thanks in advance..." + (show)
@hopefullibrarian

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.

Jump to this post

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.

REPLY
nanamc1957 | @nanamc1957 | Oct 22, 2023
In reply to @hopefullibrarian "What I've written here is longer than I intended. So sorry about that. Thanks in advance..." + (show)
@hopefullibrarian

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.

Jump to this post

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

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 22, 2023
In reply to @hopefullibrarian "What I've written here is longer than I intended. So sorry about that. Thanks in advance..." + (show)
@hopefullibrarian

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.

Jump to this post

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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