Trouble eating with HCM

@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.

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?

73 yr old male with HOCM. Started Camzyos one year ago. Long documented history of HOCM frequent syncopy leading to fainting. Onset of syncope with some labored breathing was most often preceded by a meal then getting up to walk, etc.
A very direct relationship that did not get much traction from very good cardiologists other than blood was being directed to stomach and gut for digestion. Before Camzyos 64 oz of water daily with increased moderate salt intake helped. Usually had a light breakfast and skipped lunch to help also. After Camzyos, no syncope! And I lost 10 pounds which I am keeping off.

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?

@captainterry So you lost 10 lbs from being sick or after you started Camzyos? I had been used to doing hour and half pilates in a sauna before all this started, i had to cancel my membership and havent been able to do even housework for over a year, probably longer just didnt realize until it got worse. I am praying Camzyos works for me but I am still seeing Clevelend in March for a 2nd opinion on everything. I am so glad you are doing well and able to lead a somewhat normal life again. Keep up the good work and the inspiration to all of us who arent there yet. 🙂

@karukgirl Thank you for the links, I love learning esp when it involves my heart.... I have suffered horrible things for over a year, and so thankful that I have finally gotten a diagnosis that makes sense to me of why all the weird symptoms (I am a DNP so of course it was driving me crazy, and I had never heard of this). Luckily my Boss is a national nephrologist and knew about it and insisted I make the appointment with Cleveland. I just took the heart monitor off, and I started Camzyos on Monday night. Here's the weird thing, even though it isnt supposed to work right away, I felt like a new person the very next day after starting this strange new drug. Its very very weird, I am waiting for the symptoms to start back up any minute though. Have you ever heard of this?

@cash298 Loss of weight was gradual after taking Camzyos. Probably because I became more physically active and had developed the habit of eating only two meals a day and drinking more water.
BTW I noticed you were awake very late or early this morning. Your good sleep is very important and a CPAP sleep machine has helped me a lot, although I resisted it at first.
Blessings!

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.

@tommy901 Thank you for this insightful and informative post!