1. < Hypertrophic Cardiomyopathy (HCM)

Trouble eating with HCM

Posted by auntsusie33 @auntsusie33, Feb 7, 2023

Hi, I’m here asking if anyone has issues with eating a full meal with HCM? I can only eat very little before I feel sick and possibly vomit. I have a resting gradient of 37mm left ventricle. Looking for advice. I see my cardiologist next week to address this. I’ve lost nearly 28 pounds in several months.
Thank you for listening!

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

whidbey | @whidbey | Oct 21, 2023
In reply to @karukgirl "That must have been a scary moment @whidbey, but it sounds like things are under control..." + (show)
@karukgirl

That must have been a scary moment @whidbey, but it sounds like things are under control again now. I'm glad you shared with others, this information may help them at some point. How are things now? Are you still noticing improvements to your ability to exercise and increasing stamina?

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I am noticing improvement in my stamina and am able to walk up small hills without feeling so out of breath. I also feel a "stability" in my heart. I feel the same 24/7 instead of the ups and downs of my previous heart medicine.

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whidbey | @whidbey | Oct 23, 2023
In reply to @nanamc1957 "I've been on it 4 days and my appetite is gone. I'm just very tired. I've..." + (show)
@nanamc1957

I've been on it 4 days and my appetite is gone. I'm just very tired. I've lost 4 pounds

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I didn't feel very well for a month when I first started Camzyos. I'm sorry you feel so tired. Personally I found increasing my water intake plus making a natural electrolyte/hydration drink of one freshly squeezed orange, half a lemon, one Tbls. of honey and a few flakes of sea salt really helped me feel better. I sincerely hope you feel better soon.

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drumsace | @drumsace | Nov 6, 2023

Yes I have the same problem with eating 🍽 and also am losing weight

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 6, 2023
In reply to @drumsace "Yes I have the same problem with eating 🍽 and also am losing weight" + (show)
@drumsace

Yes I have the same problem with eating 🍽 and also am losing weight

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Hello @drumsace, and welcome to Mayo Connect. HCM (hypertrophic cardiomyopathy) is a weird condition, isn't it? A lot of us have the same symptoms, and others have something different than us. The eating thing is real in my opinion. I noticed it too, but I did not lose weight. Dang it! I found I could not exercise like I did before the symptoms so the scale kept creeping up. How long have you known you had HCM? What other symptoms do you have?

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1 reply
drumsace | @drumsace | Nov 8, 2023
In reply to @karukgirl "Hello @drumsace, and welcome to Mayo Connect. HCM (hypertrophic cardiomyopathy) is a weird condition, isn't it?..." + (show)
@karukgirl

Hello @drumsace, and welcome to Mayo Connect. HCM (hypertrophic cardiomyopathy) is a weird condition, isn't it? A lot of us have the same symptoms, and others have something different than us. The eating thing is real in my opinion. I noticed it too, but I did not lose weight. Dang it! I found I could not exercise like I did before the symptoms so the scale kept creeping up. How long have you known you had HCM? What other symptoms do you have?

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I recently found my diagnosis in my medical file where it was diagnosed three years ago via a cat scan but no one told me! Brought it up to my cardiologist at my yearly appointment last Thursday November 2nd and she ordered a Echo saying there’s not a current one. I have that done in A week and see her again December 2nd! Iam currently diagnosed with sic sinus node syndrome where my pulse go fast then slow I have A pacemaker and am on beta blockers and other blood pressure meds. My current symptoms are lack of energy, short of breath, dizziness, and get very faint and nauseous when I sand! Requested a appointment with mayos. Have experience with them as a child. Also my mother had HCM.

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2 replies
shampoou | @shampoou | Nov 9, 2023
In reply to @drumsace "I recently found my diagnosis in my medical file where it was diagnosed three years ago..." + (show)
@drumsace

I recently found my diagnosis in my medical file where it was diagnosed three years ago via a cat scan but no one told me! Brought it up to my cardiologist at my yearly appointment last Thursday November 2nd and she ordered a Echo saying there’s not a current one. I have that done in A week and see her again December 2nd! Iam currently diagnosed with sic sinus node syndrome where my pulse go fast then slow I have A pacemaker and am on beta blockers and other blood pressure meds. My current symptoms are lack of energy, short of breath, dizziness, and get very faint and nauseous when I sand! Requested a appointment with mayos. Have experience with them as a child. Also my mother had HCM.

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I wish u the best of luck! Hopefully u can get some help for your symptoms. Once i was placed on metrop and diltiazam my symptoms r very minimal. Mayo is the best place to be. Dr ommen is a rockstar

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Mentor
Debra, Volunteer Mentor | @karukgirl | Nov 10, 2023
In reply to @drumsace "I recently found my diagnosis in my medical file where it was diagnosed three years ago..." + (show)
@drumsace

I recently found my diagnosis in my medical file where it was diagnosed three years ago via a cat scan but no one told me! Brought it up to my cardiologist at my yearly appointment last Thursday November 2nd and she ordered a Echo saying there’s not a current one. I have that done in A week and see her again December 2nd! Iam currently diagnosed with sic sinus node syndrome where my pulse go fast then slow I have A pacemaker and am on beta blockers and other blood pressure meds. My current symptoms are lack of energy, short of breath, dizziness, and get very faint and nauseous when I sand! Requested a appointment with mayos. Have experience with them as a child. Also my mother had HCM.

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I can't imagine you are only finding out now! That's crazy! But thankfully your cardiologist is ordering a new echo. Your symptoms sound like HCM for sure. I am happy to hear you are requesting an appointment with the Mayo. That is where I ultimately ended up. Mayo Rochester to be exact. Finest organization on the planet. I hope you will keep us posted on your progress @drumsace. This is a wonderful place to share with each other and find support. Do you have the Mayo appointment request link?

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1 reply
drumsace | @drumsace | Nov 10, 2023
In reply to @karukgirl "I can't imagine you are only finding out now! That's crazy! But thankfully your cardiologist is..." + (show)
@karukgirl

I can't imagine you are only finding out now! That's crazy! But thankfully your cardiologist is ordering a new echo. Your symptoms sound like HCM for sure. I am happy to hear you are requesting an appointment with the Mayo. That is where I ultimately ended up. Mayo Rochester to be exact. Finest organization on the planet. I hope you will keep us posted on your progress @drumsace. This is a wonderful place to share with each other and find support. Do you have the Mayo appointment request link?

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I’m originally from the Midwest and my family always traveled to Rochester in the summer to have our annual physicals so they have a lot of my medical records I also went to college in Rochester for surgery technology and nursing and did all my surgical rotations at St. Mary’s , my last job before retiring was on A heart team so I know all to well what I face surgically. Thanks for your support

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