Anyone take new drug Camzyos (mavacamten) for HCM?

I also have a head that feels like a pressure cooker. I’m super tired and dizzy. Very low BP and not sleeping.
Thank you for getting back to me

What are your side effects if I may ask? Thanks.

Yes you may, terrible unbearable headaches as if my head was in a pressure cooker, jaw ache and not going to the loo to spend a penny. Stopped it and started again but they started again so I think surgery is the way now but feel worse off the drug now. Oh well wish you all well. Too bad it didn’t work for me. Is anyone else in here that takes verapamil and prednisone?

May I ask what side effects you are experiencing? I am not feeling well on it either but my dr keeps saying everything is fine because my heart is better

My Doc says my heart is running well, however I do get light headed a little more often and heart flutters more often. For me it's worth the trade off. I do not know yet how it will effect me when I get more active.

Thank you for your good wishes I am sad it didn’t work for me. That’s life.

I hope you get good advice on your next steps. I stayed on Camzyos against my doctor’s recommendation to give up and have surgery. I was feeling so much better and had no side effects, even though my gradient was not improving. I was able to get an enzyme test through my family doctor to see how I metabolize the drug. Seems I need a higher dose. Went up to 15mg and finally the gradient went down by 50%! I’m praying this continues. I wish we were part of a study on longer term effects of Camzyos. I want to
be optimistic but always wonder what’s next! A new drug, afacamten, is awaiting approval. For people who don’t respond well to Camzyos. Maybe your doc knows about it. Hope you feel better.

I started Camzyos a few weeks ago and immediately felt much better (feel ok most of the time anyway) started with terrible side effects headaches etc…. Came off for a week and restarted for several days and side effects returned. Now free of the drug but feel absolutely terrible. I am worse than before and now am looking at surgery as could not get up small hill yesterday Which is normally fine for me. Thus drug has changed something in me. Very very upset but glad for all you lucky people that it is working for.

I am not a physician. Only a HOCM patient and a 2 year user of Camzyos with great results. I would schedule a consult with a neurologist to get a different out of the box perspective on your strange symptoms.
That is:
Two short, but intense episodes over 2 weeks. (not all the time).
Transient episodes (2 to 4 min. total) with pain over your entire body at the same time (central nervous system?).
No such problems during the period you were on 5 mg dose.
Before giving up on Camzyos, I would both see my cardio and consult a neurologist for evaluation. Get the two specialists to talk with each other. Maybe you and both doctors ( and us) will learn something helpful!

Next step to see cardiologist beginning of April if not before. So very disappointed about this. Has anyone else had similar outcomes? I can’t be the only one? I am wondering if it interacts with other drugs I am on. So sad about this. Oh well.