New HCM symptoms with increased exercise

Posted by mdr15 @mdr15, Aug 7 6:27pm

Hello, I was diagnosed with HCM 16 years ago and fortunately during that period I lived almost symptom free and was only prescribed 12.5 mg of Metropol. Before my diagnosis, I was an avid cyclist who raced and competed in bicycle hill climbs. Obviously the strenuous training and competitive events came to an end once HCM entered the picture. My cardiologist encouraged me to keep riding my bicycle at a reasonable, non competitive pace, but perhaps out of fear I found myself riding less and less with many months between even short rides.

Fast forward to the present and now 67 years old, some unhealthy weight gain, poor cholesterol numbers and lack of exercise I decided to slowly return to consistent cycling last March. Obviously I take all the precautions such as riding at an easy pace and slowly ramping up my miles and time. I even use an electric pedal assist bike for the hills around my area. My concern is that recently I have started experiencing more symptoms such as being winded when I get to the top of a flight of stairs, mild chest pains and fatigue in the afternoons. Although the shortness of breath has been happening during the past couple of years, I attributed it to my weight gain since a stress echo last year did not show any progression from one performed 6 years ago. The odd thing is that I don't experience these symptoms on the bike, but usually the days following my rides. In fact once my heart warms up I feel pretty good riding.

Anyone else exercising or cycling with HCM have similar stories or anything to share about their experience? My cardiologist suggested I increase the Metropol dose to 25mg 1X day. I also had an echo in January and like the stress test it did not show any difference from the year before. I'd like to keep cycling to improve my fitness and keep my heart healthy, but I worry that the newly increased time riding and exercising may cause additional harm to my heart. Thank you.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Aug 12 10:10am

@mdr15, hello and welcome to Mayo Clinic Connect.
I like that you have a great attitude and approach to getting back on the bike again. It sounds like it is something you love to do, and learning to accept your new limitations can be the first step to achieve your goal.
Nobody wants this stupid condition. And it's difficult for those who don't have it to understand what it is like. I suppose it's like that for all of us...until it happens to us, we don't understand it either.
Shortness of breath is a hallmark symptom of HCM. For myself, I had good days and bad days. It never really made sense why certain little things would leave me gasping for air.

Your cardiologist encouraged you to keep riding, which sounds like a green light to proceed, but proceed with caution. Which you are. And your latest echo/stress showed nothing new. That's wonderful news actually.

Disclaimer: I am not a doctor! But I do not believe that increasing exercise will "harm your heart".
HCM is the result of genetic mutations for which there is no cure, only treatment. And depending on the progression of HCM, some people will worsen while others live their lives fully with no real issues. Rather HCM, which has a list of similar and non-similar symptoms of which we live with and which affect each person differently. I believe the biggest issue, that nobody like to talk about...is SCD. Sudden Cardiac Death. That is the biggest issue naturally and your doctor seems to be reassured by your test results and encouraged you to ride.
I was told not to ride my Harley until I had further testing. SCD was the reason he told me that. So I didn't ride. And now, at 67, I still know I can ride, but I haven't. But I want to! But I haven't. So I applaud your dedication to getting back out there.
You are doing everything the best you can. Slowly. With caution. And listening to your body.
If you still have doubts, perhaps a second opinion would make you feel better.
Have you considered a second opinion? Just for reassurance?

brumasterj | @brumasterj | Aug 17 8:39pm

Dang it stinks!
If you get a chance read some of my posts! I had no idea i had HOCM till i went into heart failure on a bike ride!
57 yrs old put on camzyos to get stronger could ride my bike again but no hills!
2 months out feom septal myectomy and hope to be back out riding soon:)

baystater101 | @baystater101 | Aug 18 9:00am

Reply to mdr15:

Another lifelong cyclist here. I was diagnosed with HCM 6 or 8 years ago but I was asymptomatic till a year ago when SOB (shortness of breath) hit while I was on a rather mild hike.

I had a septal myectomy 3.5 weeks ago, so my story will be changing, but I can report that in that year that I was symptomatic before the surgery I continued to go to the gym 4 or 5 times a week and did not experience SOB doing my regular aerobic and mild weight-lifting there. (I'm 73 y.o.).

I would feel SOB during that year seemingly randomly when going about daily life and perhaps engaging in a mild unexpected physical exertion.

So, I too am not a dr., but I encourage keeping active while listening to the body, so that inactivity does not spiral down, leading to even less activity.

I am still in surgery-recovery mode (at home since August 1), and I am now walking about 2 miles a day (not necessarily in one session), at least on days when the temperature is below 90 and the humidity is not too high. I'm still listening to my body and resting when lightheadedness hits (so far, no SOB).