HCM with no options for medication for relief of symptoms

To @rmhc123:
I have obstructive HCM. My situation was under control with metoprolol, very healthy diet, taking walks every day (not after a meal for it will make me have chest pain). I lost 20 pounds in 3 months by eating healthier (less protein, less amount of food also). The more weight I lose the better will be improved my symptoms (chest pain, shortness of breath). Also I noticed the stress, the anxiety and depression and 80 hours of work a week in the patent office made all my symptoms worst. I quit my stressful job and took a lower paying less stressful job with less hours only 40 hours a week. That is the way I controlled my symptoms. I wonder if this can help or not to your case.

If you are having shortness of breath, please look at a second opinion of another Cardiologist highly specialized in treating patients with Camzyos since the low dosage of 2.5 mg a day may work for you.

Please search online and monitor for the trials they are going with a new medicine not FDA approved for now but it appears to be very promising with less side effects that Camzyos. That new medicine is named Aficamten | Cardiac Myosin Inhibitor.

I am working on developing a hybrid between Camzyos and Aficamten with Artificial Intelligence technology but it will take a while to perfect the formula to have it sent to the labs for experiments and trials.

Unfortunately, I got for the very only 1 time Covid 19 last Nov. and the obstruction in my heart became very severe 2.2 cm blockage at the edge to have a heart attack at any time. Now I am on camzyos 5 mg that works great on me for the 6 weeks I have been taking it. My chest pressure is almost gone unless I am too upset or too stressed.

I hope anything I said here will help you and you will get better.

Thank you so much for sharing. My cardiologist specializes in HCM at Emory University. She said I am a possible candidate for a clinical trial study for Aficamtem, but those trials take awhile to get going and I have to meet certain requirements. She said the Camzyos is under trial now for use with patients with non obstructive HCM, but it will likely be 1-2 years before the FDA approves that medicine for use with non obstructive HCM.
She is my 2nd cardiologist and both of them agree that I likely have fluid in my lungs which is causing the symptoms, but the Lasix doesn’t help.
I appreciate your response. It can be a very isolating experience to have this disease so I am glad to have found a support group.

Hello there @rmhc123, and Welcome to Mayo Clinic Connect! I'm so glad you found this group too.
HCM is so weird, isn't it?
I can remember having days I could walk my normal 6 miles, and days that tying my shoes would leave me gasping for air and have tachycardia. Or eating a large meal would wipe me out for hours. I could walk up stairs, but on a gentle slope I would have to stop and catch my breath. My heart would pound so hard at night the bed would move. Crazy stuff.
May I ask how long you have known you had HCM? I am glad that you have a cardiologist who specializes in HCM, because that is super important. It must be so frustrating to not be able to find something, anything, that will help you. It seems so odd to me that you are so very symptomatic, but they say you are not obstructed. And two doctors think you have fluid in your lungs but Lasix doesn't work. Have you had a chest x-ray to determine what they think is likely, is correct?
Since this disease is strongly genetic, have any other relatives been diagnosed too? If you have children have they done genetic testing?
Wow, I asked you a lot of questions! I just feel so bad for you that your symptoms are so strong and you have nothing that is helping you...and you have seen two doctors. How often do you see your cardiologist and have echoes? Have you had a lab test for your BNP?
Ok...all done with the questions for now. You are a teacher, so you are used to having homework assignments!

Thank you so much for replying! It helps to not feel so isolated. It am a few months shy of having been diagnosed 2 years ago. I feel like I have had literally every type of xray, echo, mri, etc. that is out there. I will go back for labs and testing in July. I had hoped to be a part of a clinical trial for a new drug, but I guess it takes a while to get those up and running. All of my first degree relatives have been tested for free and are awaiting results. One of my daughters came back negative, but I am worried about my other daughter because her echo showed some borderline thickening.
Do you mind sharing more of your story and what has worked for you?

You have had a lot happen in a short amount of time @rmhc123 , Wow.
I felt so alone too, until I found Mayo Connect. I had never heard of hypertrophic cardiomyopathy. I could barely spell it! I didn't know anyone with it, and that left me feeling just as you said...isolated. I couldn't believe it when I hit 'reply' on my first post and someone got back to me right away. Thank goodness there were other people out there with this dumb disease too!
What worked for me was open heart surgery and a septal myectomy. All the different drugs I was on did nothing. Nothing at all. I just kept getting worse. HCM was not taking my life, but it was taking what I loved in life away from me. I love to hike, walk, dance, do yoga, and I was not longer able to enjoy them. I could barely do laundry anymore.
I felt so depressed.
And I was scared too. It felt like I may die at any time. It was not until I made the trip to the Mayo Clinic in Rochester I finally knew I had found where I needed to be. I did not like hearing I needed open heart surgery. No. I did not like that at all. But after the shock of hearing I needed open heart surgery dissipated a little bit, I prayed a lot and actually had some peace. I did not want to live with the symptoms I had and wanted a chance to get back some of my life. It has been three years and I am walking my usual 6 miles everyday and have very few symptoms anymore. Sometimes I even forget I have HCM. I no longer take anything but a baby aspirin.
I know you said you have seen two doctors, and you feel confident with what you have been told. Have you considered perhaps a third opinion? Mayo Clinic was my third stop and it made all the difference for me. They are the BEST in the world in treating HCM. They are experts in septal myectomy surgery, if that is the course decided. I was seen in consultation at Cedars-Sinai in California (l live in far Northern California--we like to distinguish ourselves 🙂 ) I had my diagnosis confirmed there, and again at Mayo but the Mayo Clinic had a different approach and I sometimes wonder if I had not gone to Mayo, if I would be on Camzyos hoping it gave me back my life. I don't want to take medications the rest of my life, and the septal myectomy is the cure for the obstruction. HCM will be with us forever, but having no obstruction, no side effects from medication is liberating!
In the meantime, while you wait for the genetic testing results for your family, is there a favorite hobby or activity you can do that helps your tortured mind relax?

Thank you, again, for corresponding. We have some similarities. I am actually a certified yoga teacher and love walking as well. My first sign of trouble was in the Grand Canyon- I literally couldn't breathe my way out and had to spend the night!
One difference is that I do not have an obstruction and am not a candidate for any surgery. That’s why they are trying this new drug Avimaectem?- for people like me.
I’m so glad you got relief from your surgery. I was told the only surgery for me would be a new heart, but that only happens in about 5% of patients.
My greatest concern is afib. I know I have had mild versions of it, just not sure how bad it has to be to call 911 (I live alone).
Again, thank you for taking the time to reach out. It’s so powerful speaking to others who can relate.

I never heard of HCM either! There were heart issues on my paternal side, but no one was ever diagnosed with HCM. My story is somewhat similar to Debra's. I, too had a septal myectomy at Mayo. Talk about fear and anxiety when told that surgery was necessary! Up until Feb 2022 I was leading a normal life even though yearly echoes showed unwanted progression. It was sudden when I reached the point where I needed further action and July, 2022 was the big event. I did have a couple of complications a few weeks after, but like Debra, have my life back. That also includes walking at least 3 miles most days, gym 3x a week, bike riding, paddling, gardening including mowing grass.... My gradient number was too high to consider medication instead of surgery. Since surgery, I do take 50mg of Metoprolol and a statin daily. Sending courage! No one wants to face surgery but I have absolute complete confidence in the professionals at Mayo. From the comments, you can see that each of us HCM patients need a personal plan for treatment.

Thank you for sharing! So many of you have had surgery, but this is not an option for non obstructive HCM. There literally is nothing they can do for me, unless this Afimectam gets approved.
I’m so glad you are doing well!!!

Hi @rmhc123
I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib w rvr presented itself up until the afib my only symptom was occasional lightheadedness. The afib caused fatigue and frequent very high heart rates even with rate medication. Afib needs to be treated aggressively when you have hcm. I see a cardiologist at Mayo clinic in Rochester. At my first visit he mentioned several medications he uses if I were to develop symptoms. When afib came he sent me to the heart rhythm clinic at Mayo. The Ep I saw gave me all my options and when I asked his recommendation he said he would start with medication so that is what I did. I had to be in the hospital three days to get this drug but now feel great and have been in sinus rhythm with no side effects for 9 months now. I also have an Apical aneurysm which happens in a small percentage of non obstructive patients. If you have afib, are you being treated for it? I can't say enough good things about Mayo Clinic. You might also check out the Hypertrophic Cardiomyopathy Association online and on Facebook.

Thank you so much for sharing! It’s nice to hear from someone who has non obstructive like me..