Trouble eating with HCM

I have been on Camzyos for three weeks now and kind of wish I had just stayed on the same medical intervention you are currently on. (Disopyramide and Metoprolol) It is such a hassle to have all the ECHOs , submit all the paperwork, and not feel any different! If I improve drastically, I will let you know.

Hi Debra! Well, sorry for the late reply. We have been moving our daughter to college, so been a bit out of pocket the past few weeks! Thank you for your note and welcome. I am happy to connect and learn of others' experiences on this road we walk. I am on a beta blocker, which my doctor wants to increase, but I'm doing that slowly, as, of course as you know, it makes you tired and workouts are more difficult. Glad you were able to have surgery. Did it help? I found out I had HOCM in my early 30's after a routine visit to an internal specialist who was also a cardiologist. He did routine EKG's on all patients and mine was highly irregular. After that, we did an echo and of course, it was diagnosed immediately. Since then, however, I have noticed that, in times I have taken off from strenuous exercising (which I have done since I was 16), my septal thickness improves. Hard to find a balance in the exercise sphere for me. I have a hard time finding that "moderation" space, you know? Well, anyway, nice to get your note and hope you are feeling well! All the best, M

Hey there @mopostorino! Thank you for getting back. Sounds like you have a LOT going on! I'm so glad you found Connect. There is something special about being able to share with other people who are walking around out there with the same condition. We are all different ages, come from different places, have different backgrounds, but we share HOCM/HCM in common and that brings us together.
It seems you are a pretty active person and have been all your life...that is the best thing you could do no matter what condition you may have. I was super active until HCOM took me down, but yes, thank you for asking, the surgery gave me back my life and I am so very grateful. I learned to listen to my heart telling me what I could do or not do that day. It seemed to me that I had good days where I could do anything, and other days where just hanging laundry on the line was taxing. But learning to listen to my heart helped me no be so hard on myself when I had those bad days. I don't have bad days anymore, thankfully, but besides being older now, I also have accepted I'm probably not going to start running again, or go hiking huge, steep mountains like I used to. You are blessed to have been diagnosed early. That isn't typical for many of us HCM folks. Are you being followed closely by your doctor? Has your daughter been tested to see if she has this?

Came here to look up this exact issue about feeling ill after eating. I eat one meal a day after my evening walk for the reason I don't feel well after eating because of HCM I believe.

in response to auntsusie33 and kam1

I also have HOCM and trouble eating more than about 8 ounces of food at one setting and have lost considerable weight. A doc warned me that the trajectory of HOCM includes trouble eating. Don't know why.

Hello there @kam1, and WECOME to Mayo Connect! I think if you take a look around this site you will find a lot of HOCM folks have some trouble with eating, eating large amounts, eating certain foods, and sometimes just eating in general. Why is that? I do not know! But I do remember having a really tough time after indulging in a meal consisting of all the "fun" stuff...hashbrowns, gravy, bacon, Thanksgiving food, those sorts of things. It would make me feel really crummy, my heart would race, pound like crazy and I would vow to not do that again. But I am a slow learner, so I did it again! In my mind, digestion takes energy and big meals take more energy and blood flow, which with HOCM is a struggle to provide. That is just my thought. When were you diagnosed with HCM? Has your cardiologist discussed a plan or course of treatment with you?

An update to this post: I have been on Camzyos two and a half months now and actually have some improvement in my stamina and ability to exercise. Yesterday I started 10 mg of Camzyos to see if I will experience even more improvement.

At about 6 weeks, I began having missed heartbeats and possible tachacardia and felt unstable. ( I have a handheld ekg machine which allows me to send my ekg's to my cardiologist) After consulting with my Cardiologist, he increased my Metoprolol which i take for my other heart issue: mitral valve regurgitation, and my heart stabilized. I write this for anyone who takes two drugs for heart issues and isn't feeling well.

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?

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

response to kam1, quinn, et al
Before starting Camzyos I could not eat anything bigger than a granola bar before exertion or I would suffer massive dizziness, chest pain, shortness of breath - the works. I felt so much better when I didn't eat that I ended up losing about 30 pounds. On Camzyos for just under a month now and it doesn't seem to matter what I eat or how much of it - no symptoms at all. Now if I can just keep those 30 pounds away...!