Trouble eating with HCM

Exactly how mine is been dealing with this for years and telling my doctor about it! Always was told its either exercise induced or allergens in the air! It wasnt until i had two back to back heart failures that i was diagonosed with HCM severe LVOTO 122mmHg
Started me on camzyos to get me to feeling better to await surgery! After 3 weeks on camzyos 31mmhg
I could not believe how much better i feel althoufh im a ways away feom being 100%

Yes I am exactly the same. I plan my day around when I will eat. E.g, If I have something to do in the morning I will skip breakfast. I do this on the days I have to commute by train to work. If I ate before I left I would never get there because of my symptoms after eating. My heart will race, I’ll get chest pain, palpitations and if I attempt to walk I have to stop every few steps. This can go on for some hours after I’ve eaten sometimes.

Hi, I’m Teri, recently diagnosed and with a gradient of 214. For the past year ( I have just been diagnosed a couple weeks ago) I have been getting ill when I eat, nausea, chest pain, back and arm pain, having to lay down for hours. Seen Dr after Dr with no explanation, now I figured out myself the cause is related. So disappointed in my doctors. Planning a second opinion in March at Cleveland HCM clinic.

In HCM (hypertrophic cardiomyopathy), trouble eating a full meal is actually not uncommon, especially in people who have outflow tract obstruction (a “gradient”). A resting gradient of 37 mmHg is in the obstructive range, and this can explain some of the symptoms.

Why eating can make you feel sick:

Several things happen when someone with obstructive HCM eats a full meal:

1. Stomach fills → pushes up on the diaphragm → pushes on the heart.
When the heart is already thickened and the outflow tract is narrow, this pressure can worsen obstruction.

2. After eating, blood flow is directed to the gut.
This can temporarily reduce blood available to the heart and worsen lightheadedness, nausea, or near-fainting.

3. Full stomach increases vagal tone.
This can trigger nausea, dizziness, and even vomiting in people who already have borderline cardiac output.

4. If the person has arrhythmias, meals can sometimes trigger symptoms as well (especially tachycardias).

When this becomes concerning:

Unintentional weight loss of 28 pounds in a few months
→ This is significant and needs medical evaluation.
It may mean they simply can’t maintain intake because they feel too sick, but it also raises concern for:

Worsening obstruction.

New arrhythmias.

GI disorders unrelated to HCM.

Medication side effects (β-blockers, verapamil, disopyramide, etc.).

Helpful interim steps (NOT a substitute for seeing their cardiologist):

While waiting for the appointment:

1. Eat smaller, more frequent meals.
Avoid large dinners especially.

2. Avoid dehydration — even mild dehydration increases obstruction.

3. Avoid alcohol, caffeine, or heavy meals, which can worsen symptoms.

4. Check if your medications are optimized.
Beta-blockers or calcium channel blockers help many people by reducing the gradient.

5. Track symptoms:

Time of day.

What they ate.

Heart rate.

Whether symptoms come with exertion.

What the cardiologist may look at:

Updated echocardiogram with gradient at rest and with provocation

Whether they are a candidate for medication adjustment.

Whether they may benefit from Mavacamten (Camzyos) or a septal reduction therapy (alcohol ablation or surgical myectomy) if symptoms are severe.

Screening for arrhythmias (Holter or event monitor).

Screening for GI causes if symptoms don’t match cardiac patterns.

Bottom line:

Feeling sick or unable to eat full meals can happen in obstructive HCM, but losing 28 pounds is a warning sign that the gradient or overall heart function may need reevaluation. You are doing the right thing by seeing your cardiologist soon.

@carlap67 this is all miserable, I can’t do anything for hours after I eat either, I have to actually lay down and feel like my heart is exploding along with n/v and pain, ugh, it’s so exhaust

@karukgirl does everyone with HICM need to get an ICD

@cash298 From experience and reading, not everyone needs to get an ICD. We are all so different in our presentations of HOCM that our cardiologists evaluate each of us on our individual needs. My story is that I did not need an ICD during the septal myectomy pre-surgery time. One of the two complications post-surgery was dizziness and giddiness along with a couple of syncope. To make a longer story short, 4 months after surgery, I acquired Buddy, my ICD. End of that frightening complication.

Hello @cash298 / Teri,
Welcome to Mayo Clinic Connect. I am sorry it took awhile to welcome you.

That gradient you have is pretty impressive.
But I do not mean that in a good way!

HCM is such a weird condition. There are so many strange symptoms and issues. Sometimes it takes a long time to diagnosis us correctly. I did in my case. I was diagnosed with four or five different heart diseases, none of which I had.
I had two full-on Thanksgiving dinners this year. I was absolutely miserable after each one. I simply ate too much.
Sure. I knew better. I had good intentions...It just tasted so good I couldn't find my "OFF" button soon enough.
Boy. Did I suffered for hours afterwards. This is a pretty common symptom in our little group.

March seems like a long time to wait, but then time does go by so fast. I'm super happy to hear you will be getting a second opinion from a Center of Excellence (COE) at the Cleveland Clinic.
In the meantime, while you wait, have you taken it upon yourself to learn as much as you can about what is living inside your chest? Here are two links to get you started in case you haven't already:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.4hcm.org/
Are you otherwise healthy? Has your HCM limited you in other ways?

@cash298 things have improved for me significantly since I posted this. I have now been on Camzyos for 9 months and this symptom and many others are finally resolving themselves. I am able to do things I haven’t been able to for years. I have still been a little breathless after food but nothing like before, and at my latest appointment, a few days ago, they raised the Camzyos dose to try to iron this out once and for all. I will just have to wait now to see if the Camzyos will allow me to jump over this particular hurdle.

Hi, I have struggled with symptoms from eating for over a year before I just got diagnosed about 5-6 weeks ago. I have seen every doctor there is and no one could help me or even cared to try. Finally I asked my PCP again and she yelled at me and said I couldn't expect her to fix everything (I am a doctor so this did not sit well), so I got a new PCP, and first thing she did an EKG and said, this isnt good at all, and called my cardiologist who I hadnt seen in 5 years and she brought me in, did another EKG, then an ECHO, diagnosied HOCM with SAM, the a cardiac MRI and I just started Camzyos on Monday of this week and am just sending my heart monitor back today to see if I need an ICD, I have LVOT 214 at rest and they are very concerned. Here's my question, I thought this drug had accumulative effects? I have had very very few and mild symptoms since I started the drug, I dont think thats even possible???? Maybe just a fluke but I'll take it.