HCM with no options for medication for relief of symptoms

I was on that for awhile, but it didn’t really make a difference.
Did you have a cardiac transplant?

Thankfully I am at a center of excellence. My cardiologist who is brilliant and wonderful to partner with on this journey just mentioned aficamten to me. The trial just closed so if all
Looks good in the data and FDA approves I will try this. I have one of the rarer genetic mutations so it may not work for me. I am thankful I do not have obstruction but options seem very limited. He offered a mild
Diuretic so I’m gonna try that. I do think my symptoms are exacerbated bcz of “hormone transitions” too so trying to look at all the angles 🙂

This may help: try to stay on a very healthy diet, vegetables, low carb and low fat. Take slow walks and "lose weight by eating healthy and less amount of food". Reduce your consumption of sugar and salt. Stay positive and avoid being stressed. I did all of that plus I took metoprolol and I was fine for 15 years till I got COVID 19 that created the obstruction of my heart so now I am on Camzyos 5 mg for 4 months doing great with no angina symptoms at all. I suggest you talk to your cardiologist about "metoprolol" if it may help you or not.

I can relate. I am in something of the same situation. One thing I have found is that hydration is so important. Just frequent sips of a low salt/sugar hydration water throughout the day seems to help my energy level. I know what you mean about the high heart rate and feeling stressed and scared. I usually resort to music and zeroing in on my breathing which sometimes helps. Talk to your doctor about how you are feeling; hopefully, he/she/they can help with some way other than drugs.

I just had my stress-echo and they found no obstruction. Yay! but I'm still having chest pains, shortness of breath and dizziness. I was on a beta blocker for many years and side effects were not that good. I'm not even sure they helped. I am very active and work out almost every day. I want to exercise without worrying about my heart doing anything deadly. My cardiologist says not to worry. I don't trust him, but want to believe him. What is the consensus about strenuous exercise in this sort of situation? I've heard don't and do. Does anyone have an opinion? Thank you

Our situations sound similar. My first cardiologist placed no restrictions on exercise. My new one at Emory suggested nothing high impact. I can tell my disease has progressed in the two years since my diagnosis. I only walk and practice yoga for exercise.
Since no medicine works, I will now be starting a clinical trial study with a new drug that has yet to be approved.

I wonder if that new drug clinical trial is "aficantem"

Each of us is different, what may be OK for you may not be OK for me or anyone else reading this. No obstruction during a stress test is great news! Are you DRINKING enough water? Should you be adding electrolytes? (Ask about that before using.) If not, it might be why you are dizzy. May I suggest that if you do not trust your cardiologist to find one that you can trust.

Yes!

I'm curious... did you used to be more physically active as far as cardio and strength training? Do you think it led to increased symptoms? How can you tell your disease has progressed in the two years since your diagnosis? Have your symptoms increased? Or have your echo cardiograms changed? Have your ECG's changed? What medicine have you tried? Do you feel more confident with your new cardiologist? Just trying to make sense of this disease, which I know expresses a bit differently in each of us. Thank you so much for sharing your experience with your HCM.