Trouble eating with HCM

I'm happy to hear it's gone so smoothly for you. There are some fellow Camzyos folks who are having a bumpy ride with regulations, insurance issues and side effects. And super good to know your ICD has never fired off! I've heard it's terrible! Has the Camzyos given you back your life?

Oh my gosh - same here. Can't do anything remotely aerobic with food in my tummy! Will have shortness of breath and sometimes even dizziness climbing stairs or, Heaven forbid, trying to do the elliptical at the gym!

Same here. Cannot overeat or will have fatigue and rapid heart rate/arrhythmias. Had the best margarita of my life last month in San Antonio, along with a moderate meal, and thought my heart was going to jump out of my chest. Wouldn't stop palpitating. The 93 degree heat didn't help either. Had to return to hotel room to rest where it was cool, and it subsided. I, too, am on metoprolol.

Hello @mopostorino and welcome to Mayo Connect. Thank you for sharing your HOCM experience with others. It is comforting to know that you are not alone with your symptoms. I used to think I was crazy a little bit when on occasion I would indulge in a big breakfast or large meal and feel awful. It was not every meal, just the rare big ones. Like you say, when I would do my 6 mile walk I had to have an empty tummy. I'm glad you found the HCM group. There is a lot of information you can read that may help you understand your disease and also you can share your journey with others that may help them as well. I was on four different beta/calcium channel blockers and Disopyramide. I ended up having a septal myectomy at the Mayo Clinic, as I just got worse and worse When did you first find out you had HOCM? Did it take time to finally be diagnosed with HOCM?

I have the same experience! I am curious if you got off disopyramide to take Camzyos? Also, what dosage of Metoprolol are you taking? How long have you HOCM?

I am not on Camzyos yet. On the fence as it winds it’s way through Canadian regulatory system and hopefully gets cheaper next year under our provincial pharmacare program. Except for occasional disopyramide shortages during COVID, my meds are working ok. I am on 125 mg of metoprolol. At present I am leaning towards watching and waiting to see how everyone does on Camzyos as it rolls out before trying it. My current meds work well enough that I don’t want to face the monthly echos and dosage tweaks and all that tht brings. If I get worse I may try it but for now am sticking with the old fashioned stuff.

I was diagnosed with HOCM about 5+ years ago in my mid 50s after about 5 years of my doctor and I thinking it was a lung issue. Thankful I got the diagnosis. The meds really helped me.

@heatherdexter59, your story is like so many HOCM'ers. Misdiagnosed for many years before finally getting it right. HCM/HOCM mimics many other conditions that we often get labeled with something close, but not quite right. In my case I was misdiagnosed three times by the same cardiologist over five years, who told me to drink more water and put me on a beta blocker. I'm glad you know what you really have and I am glad you are here and following the Camzyos and the Hypertrophic Cardiomyopathy groups. You can learn so much from the Camzyos group as they share their ups and downs, frustrations and celebrations, yays and nays. They are brave for trying something so new and each one has a different experience. How often do you see your cardiologist? It is so uncommon, is your doctor experienced with HCM?

I have an experienced HCM cardiologist. It’s his speciality. I see him once a year and a “regular” cardiologist once a year - with 6 months between these 2 visits. A respirologist was the one who made the preliminary diagnosis (after finding nothing wrong with my lungs) but she wasn’t sure so referred me to my regular cardiologist. He, along with his intern, diagnosed me within 2 minutes of examining me!

My GP and I had run through every test imaginable to try to figure out what was wrong over 5 years before he referred me to the respirologist. The most important lesson for me was to keep following up with him. With tests coming back normal you begin to feel like there is nothing wrong but your symptoms are still there so it’s really important to keep following up and making sure your dr understands that your symptoms are affecting your life. This is hard to do when life is so busy so I let it slide a lot. My GP did not expect anything to come out of the respirologist referral to the cardiologist but boy were we glad the referral panned out! I feel much better now on metoprolol and disopyramide. Following this group is helpful for me in thinking about next steps..like Camzyos. I’m not there yet but this gives me much peace of mind. Bottom line be your own patient advocate to make sure you get proper care. I’m also lucky to be in Canada where the testing and specialists were all covered and cost was never a factor in delaying my diagnosis and treatment.

Thanks to everyone on this online forum! Good luck to you all!

Yes, I definitely had to get off Disopyramide to take Camzyos! I take 50 mg of metoprolol two times a day. I found out about my HOCM 7 years ago, but after genetic testing realized I had it all my life. I really noticed being winded after any cardio at least 20 years ago.