Anyone have input on living with symptoms from cardiomyopathy?

Thank you so much for this link. I will continue to research on this. Still new on the terminology. I will continue to educate myself on this difficult disease. Blessings

@marsims, that is the single best thing you can do...learn as much as you can about what you've been diagnosed with. We have to be educated so we can be our own best advocates when it comes to treatment, medication, exercise, diet, life in general. I admire your attitude. Faith is powerful. It is having confidence in what we hope for and assurance for what we do not see. (Hebrews 11:1)
It must be unsettling to say the least worrying about if/when you may have a heart attack! That would make anyone anxious! When do you see your doctor next? Maybe that would be a good opportunity to ask for a second opinion? The Mayo Clinic is a world leader in complicated cases. Are you near a Center of Excellence (COE) like the Mayo?

You have truly been my angel today. You are so encouraging and supportive. I had a cardiologist in New Jersey, Standford university medical in California and now my current cardiologist at the University of Alabama. None of the cardiologists ordered the test to get to the bottom of my fast heart rate. I finally found a group of cardiologists who teach about this disease- made an appointment and he ordered the stress test. However due to other medical conditions, I became extremely tired and was referred for a heart cauterization. I am meeting with my primary care physician for recommendations on other opinions. I don’t want to go back to the doctor who blew off my fast heart rate. I had no real pain or other symptoms but feeling tired. Sorry for the long summary. I shared everything as it might help someone else. Thank you❤️

Consider Pilates if yoga
Inversions etc brings on symptoms. Move your body however much you can each day and sleep rather than caffeinate had been the best advice I got

Hello, I have HOCM with symptoms and am not a candidate for an ablation or Cazmyos but am a good candidate for a septal myectomy. I was told I should fix my HOCM and get the surgery. Was anyone told to get the surgery but decided not to for some reason?

I am a 24 years and hcm patient with arrhythmia done septal ablation in 2020 and implanted ICD in 2022 after two years currently gastritis in stomach now i am faced many problems.. What is the best treatments to get accurate cure of these heart problems in india?

Hello @souravroy1997, and welcome to Mayo Clinic Connect.
Gosh, I am so sorry to hear you have HCM and now so many other problems, at any age, but especially so young.
Is your cardiologist in India knowledgeable about HCM? It is important that they are because there isn't really a cure for HCM, as in most cases it is likely genetic. It is important, too, that your cardiologist is familiar with this because there are things like medications that can help the symptoms.
Does anyone else in your family have this condition? Are you able to seek a second opinion somewhere else? The Mayo Clinic in Rochester, MN is the world's leading expert in HCM and see patients from all over the world. Would this be a consideration for you?

Hello @souravroy1997. I combined your discussion with an existing discussion titled "Anyone have input on living with symptoms from cardiomyopathy?" - https://connect.mayoclinic.org/discussion/symptoms/.

In this discussion you can meet many members living with the symptoms of HCM including arrhythmia. @souravroy1997, you may also be interested in this article "AIG Hospitals in India joins Mayo Clinic Care Network" - https://newsnetwork.mayoclinic.org/discussion/aig-hospitals-in-india-joins-mayo-clinic-care-network/.

Saw my cardiologist today, 12-4-24 to go over blood work results, which I take every 3 months (nothing ever changes), I was told today by my Cardiologist if I don’t want to take camzyos with the side effects of death then I just have to suffer with shortness of breath…..I can’t walk more than 30 feet with out getting shortness of breath….In the house I walk very slowly and stop very often….if I leave the house I have to be in a wheelchair…..does anyone have these problems, please let me know what you have done…. Thank you in advance. MMB

I am a very weak old 64 years old man. Before I started Camzyos to treat my HOCM, I had chest pain and shortness of breath while walking specially after any meal. I put in my mind there will not be any side effects. I started Camzyos last end of March and all chest pain is gone in only 2 days of taking that medicine. At the beginning I had very mild dizziness but my body got adjusted now I have no dizziness or any side effect. I am jogging, walking very fast, having almost a normal life thanks to Camzyos. I will keep taking Camzyos till the Cardiologist ask me to stop it. This is my experience and I hope it helps. Good luck to you and I hope you get better soon!