HOCM Symptoms: Why are they starting now? What next?
I have been diagnosed lately with light HOCM (13 mm -14 mm thick)
I am 69, usually healthy, and used to run regularly a few miles a week. It all started all of a sudden when I climbed the stairs in my house feeling inconvenienced in my chest and having strong heartbeats. From all other aspects, all cardiac checks indicate O.K. including Cardiac C.T. for virtual catheterization.
Much frustrated I have completely stopped all intensive cardiovascular endurance. I am concerned about the chest inconvenience and the strong and fast heartbeats I experience with no consistency; Could be a few days without any issues regardless of the activity I do, while one day without any warning I can be short of breath and have all the above that leave me exhausted.
Assuming this HOCM did not actually start at this age of mine but was there since I was born, my question is how come I did not have any symptoms till now? What happened to change my physiology in such a way that now those symptoms are so prominent? Anything that I can do excluding medicine to reduce or eliminate symptoms totally? Could it possibly be that my symptoms are not HOCM-related and are a result of a different medical issue?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
I was doing different chores and work and was getting winded more than usual and I thought it was cause I was getting older and one day it bit me and if it wasn’t for my wife I wouldn’t be here, my cardiologist says medicine and surgery is all you can do, so Mayo did the septal myectomy and ablation and I’m stuck on pills forever
@oferb69, I'd like to add my welcome along with @thomasandmichelle. You're asking good questions about why symptoms of HOCM appeared only later in life and what happens next. I'm tagging a few members like @cynaburst @janicepike @jojs @karukgirl @valeriecowart @joyce1109 @fitchizumi @jhoffmanj @rrowner2 @janetcf @jakegeorge823 @mbcube @timdines. Some members, like you, only recently and later in life have been diagnosed with HOCM, while others have been walking this path for a while.
You might also be interested in these older yet relevant discussions and the wisdom shared among members:
– Where should I go for further treatment after diagnosis of HOCM? https://connect.mayoclinic.org/discussion/where-should-i-go-for-further-treatment-after-diagnosis-of-hocm/
– Diagnosed with HOCM last year. May be time for surgery: https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
What has your cardiologist recommended with respect to activities and exercise for you? Are you on medications for HOCM?
Thank you so much for your welcome and links for more info.
I am not on any medications as the cardiologists are unsure whether my symptoms necessarily relate to the mild HCM I have been diagnosed with. So medications and surgery are not an option at all at this stage. Yet I am with strong heartbeat palpitations and a pulse that can reach 90-95/minute (normally I am with a pulse of 45-50/minute). This happens mostly in the afternoon following a day's activity and after a full meal. Also, if I make an exceptional effort such as quickly climbing stairs or making a quick uphill walk. I wonder what else may cause such symptoms and whether there is a way to rule out the HCM as the cause of it and put the finger on the real cause.
I can relate to your story. I am a 72 year old female, was also diagnosed with HOCM in my mid 60's and was told that nothing would ever come of it. Hypertension seemed to be the root cause of my HOCM. And I also have a very good friend who had the same thing happen about the same age but she did not have hypertension. We will never know how or why this happened to us but it did and we just have to deal with it. After many years of medication, I had a septal myectomy in Feb. 2020. My friend also had a septal myectomy this past spring after medications did not help her situation. Both our surgeries were successful. We will never really know why this "happened to us". It is important to work with a qualified medical team to guide you through this process. There are many good options for treatment. We were both treated at Cleveland Clinic since it was closer to us than Mayo. They are both excellent choices for treatment of HOCM.
Even though this is a touch road, we are very fortunate that there are are good options available to treat HOCM with good outcomes. Good luck on your journey. You are not alone.
Welcome to the HCM group. We are not here because we wanted to be, but still it feels good to be in touch with others who may share a lot of your symptoms, concerns and experiences.
I had a septal myectomy and papillary myectomy at the Mayo in Rochester two years ago. Before I had the surgery, I was plagued by the strangest symptoms that I could not understand. I hiked our mountains (8,000 to 10,000 ft elevation) ballroom/swing dance lessons for ten years, walked/ran 6 miles each day. Rode a Harley. And slowly I noticed I was having trouble with chest pain and shortness of breath. Even doing laundry became more than a 'chore' but I would get tachycardia from the least little thing. I also noticed that on the occassional dietary indiscretion, like biscuits and gravy/hashbrowns/bacon (and these were not typical meals for me) I would suffer from terrible tachycardia, felt 'head rushes', tightness in my neck. There were good days, when I thought I was fine. There were other days I knew something was wrong. It seemed to progress over time. My heart would beat so hard, the bed would shake at night. I was misdiagnosed for several years, and finally, when my FP said my heart murmur was a grade 5/6 he insisted the cardiologist look again for something that was eluding him from his diagnosis of mitral valve prolapse. I got short of breath/tachycardia just walking on a gentle slope. I was told to drink more water, that I was just dehydrated. Not until I got to the Mayo Clinic were they able to diagnose my condition, HOCM, and told me I needed surgery. You sound healthy. You sound like you want to learn more about this condition. The answer to the 'why now' question is standard: because it just happens that way. In my opinion, depending on your location, a lot of cardiologist do not see this diagnosis in their practice very often, and can miss it completely or underestimate it's potential for life changing symptoms. Surgery is not done in every case, medications may or may not help in some cases. Treatment is based on each person and their circumstances. From what I know there is no 'cure', as it seems to be mostly a congenital heart condition. The cardiologist I saw at the Mayo was able to interpret the echo/lab/xrays and by asking questions not only gave me an answer as to why I felt like this, but how it can progress or even cause sudden death. That was a wake up call!
You are not alone, there are many on this site who have walked this same road. I felt so much comfort being able to ask questions and have folks answer me. Feel free to ask me anything you can think of…I will be happy to share my experience with you. It's scary to learn you have this, but having good information is the best plan. Happy New Year, and best wishes.
My daughter was just diagnosed at 38. We all did genetic testing. Both my mom and I carry the gene, but neither of us got the disease. It is genetic. For my daughter, pregnancy was what caused her to get the disease, having the gene.