Newly diagnosed with HOCM

I am doubtful that the Camzyos is the cause of your problems. I am a physician and have HOCM which can be a very debilitating condition. Camzyos gave me my life back. It is a myosin inhibitor specific to cardiac muscle so it does not affect anywhere else in your body.

Hope this helps.

I am glad that Camzyos has worked for you.
Thank you for your reply.

Hello @soonerfan, and Welcome to Mayo Connect.
Gosh, reading your post made me feel so bad for you. How terrible to be so dizzy you need a walker! I would feel sorry for myself too. But I am glad to hear you have such a great support person in your husband. That is a blessing for sure.
Does your cardiologist know about all these symptoms? No two people are alike, and that means everyone can have different experiences on the same drug. There have been some members on here Connect that did not respond favorably to Camzyos and had to go off.
I would 100% be sure to get in touch with your cardiologist.
Are they experienced with HOCM and Camzyos?
Have you thought of a second opinion?
You need to be your own best advocate and it may take reaching out somewhere else just to be sure you are in the right place with the right medical person.
I'm glad you came to Mayo Connect. I hope you find some answers that help you.

Thank you, yes my husband is a blessing, I feel so bad for him taking care of me. I feel so needy ( which is hard for me, I’ve always been so independent) He watches me like a hawk.
My cardiologist does know about all my symptoms I am waiting on a return call from them. @ this moment I am trying to recover from C-Diff. Which I think I got from the antibiotics I was given for the UTI-sepsis I had @ the end of December. My boss says I can’t catch a break! I’m starting to agree with her.🤨!
Yes I’m am searching for answers/or anyone who has these type symptoms. To know what they have done or doing.
Thank you for the reply. Have a wonderful week.

In response to your original post:
"Hello - I was diagnosed with Obstructive HCM in May 2023. I am..."

I am very interested in several aspects of your post. My mother also has HCM, and had AFIB, and was on Camzyos (see my first post Dave023). Her side-effects haven't been as severe or pervasive as yours, but she has/had postural hypotension, dizziness, as well as swelling of feet/ankles, confusion, dry mouth/tongue, sweating, and brain fog.

I have been trying to eliminate or reduce the adverse side-effects from my Mom's prescribed medications (i.e. reduce the dosages or eliminate the unnecessary and/or redundant medications that target the same issues (i.e. to lower blood pressure) and/or have side-effects that also exacerbate these issues (i.e. cause postural hypotension -- a sudden and potentially severe drop in blood pressure when standing after being in the sitting or lying position).

The first thing that I would like to ask you is about your "tachycardial ablation". Am I correct in saying that this procedure was specifically to help prevent AFIB (i.e. not HCM)?

I am currently in the process of researching all of her medications on the Mayoclinic.org website to determine their: treatment usage(s), drug interactions, and side-effects. Once I have all of the info, I will be meeting with my mother's cardiac specialist to discuss the possibility of reducing dosages, or eliminating some of her meds entirely.

My ablation, was not for the HCM. It was for my rapid heart rate. I would be @120+ resting heart rate.
The only meds I am taking are the camzyos and medidrine ( for the hypotension) Iron, and Pepcid. I also
Have the dry mouth. There is a mouth rinse that works pretty well.

I’m not sure if the hypotension is related to the HCM either. Mine drops pretty low @ times.
I hope you figure out what’s making your mom’s issues.
My mom has HCM also, she does not have the obstructive kind. She gets out of breath easily.

Thanks for your reply. @soonerfan

In your first posting, you mentioned your dizziness. For my Mom, Camzyos definitely did cause some dizziness. Her dizziness and postural hypotension became quite severe when her body was weakened with Covid. She has been off Camzyos since her hospitalisation with Covid in November -- the doctors took her off Camzyos because they didn't have any knowledge or experience with it (in Canada). Her dizziness has not been an issue for the past few weeks, even though she is taking Metoprolol for high blood pressure (i.e. it can cause "dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position").

Would it be possible to tell me the name of the mouth rinse that you use? My Mom's mouth and tongue get so dry that it's difficult for her to speak properly.

I really hope that your doctors will be able to find a way to get you back to your full health.

I was on that Lopressor/Metoprole for 4 months. It bottomed out my blood pressure so much I thought it was trying to kill me, they had me taking more of the medidren ( spelling, blood pressure upper is what I call it) to raise it. I felt a little better when they took me off that. But it was after the ablation.
Biotene is the name of that mouth rinse they also have lozenges for on the go.
I have talked with my cardiologist’s nurse this morning. Since Camzyos is not working for me, they are more than likely going to refer me to a Clinic that does the Myectomy procedure. That’s a scary thought, but my first grand baby is about to make his appearance, @ the end of Feb.I sure want to be around to play with him.
I pray that they find answers for your mom. Make sure to take care of yourself.

Thanks for letting me know about Biotin for my Mom's dry mouth.

(BTW. I sat in on my Mom's appointment yesterday, and it turns out that she has HOCM (not HCM). A few weeks ago I didn't know that there was a difference. I was just trying to remember how to say Hyper Trophic Cardiomyopathy.)

Yesterday I asked my Mom's doctor about 'medical procedures' to resolve her condition. I thought that the procedures might be longer term solutions and that she wouldn't have to take Camzyos for the rest of her life. The doctor told me that in my Mom's case:
- she did react very well to Camzyos
- in fact, the latest Echocardiogram showed that her LVEF was now Normal, and that she no longer had an LVOT gradient (these are both excellent results, especially since she hasn't been taking Camzyos since the doctors stopped it when she was first hospitalized in late November)
- so, the 'procedures' are not an option for my Mom because she isn't elibible

All this to say... that it 'might' be a good thing that you are eligible for a 'procedure', because hopefully it might be the fastest way to relieve your severe symptoms, and that might hopefully continue over a longer term. Just try make sure it is an excellent clinic with an excellent track record for your type of surgery.

I wish you the best of luck for your return to good health!

Wow, that’s great she is keeping her gradient in a good range.
My husband like to read and find out things. He says that the camzyos stays in the system for months. ( that’s what he read somewhere)

Did you get your results back from the testing to see if you carry the nasty HCM gene?
I have not been tested, so I do not know if I passed it to my son.
Do women only pass this gene? Or can it come from the father’s side also? That’s something I need to find out for my unborn grandson.
I never would have believed I’d be in this situation 5 years ago. It’s crazy how it just kinda shows up!

Have a great day😊