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.

bbuck | @bbuck | 6 days ago

Agree with the heart warming up with exercise. Feel like heart is working great when exercise is happening. Great sleep when steps are met during the day!

johnwx | @johnwx | 6 days ago

I am 66 years old and in the “obese” category at 254 lbs and 6’ 2”. I have put on 10 extra pounds the last few months. I take 360 mg verapamil and 12.5 mg Hydrochlorathiazide for my HOCM. When I jump up from sitting or lying down, or go charging up stairs. I have to stop and bend over until I feel better. The same for going up hills or even on flats at times while on a walk. I am unable to stay up with others.

I believe these problems are due to my weight. It is simple as that. If I lost 20-30+ lbs, I would feel better. My HOCM numbers from Mayo-Rochester have changed little over 10 years. So my increased issues of last 1-2 years are more than likely due to my diet and lack of consistent exercise. One more item that I find is important is making sure I am properly hydrated (and not over hydrated). I also had my thyroid removed in 2024 due to a thyroid cancer diagnosis. My sodium and chloride numbers have been on the very low side of normal which I am adjusting by using electrolytes with my water once per day. I take other meds for mental health for the last 25-30 years.

So eat better, with smaller portions, and move more. That is my challenge now.

junecc | @junecc | 5 days ago

In reply to @johnwx "I am 66 years old and in the “obese” category at 254 lbs and 6’ 2”...." + (show)

I too am an avid exerciser and have to modify more as I get older. I’m 65 and take only metaprolol 12.5 mg once per day. I walk 4 miles most days, lift weights 3x per week, play golf and occasionally pickleball. My doctor says not to anything that gets my HR up fast. I can feel when it happens as I get winded.
Anything that involves a hill or stairs, I need to stop and catch my breath.
I’ve noticed my resting HR is in the high 60s/low 70s. In the recent past it was high 40s/low 50s. Is that the HCM progressing?
I do make sure I’m hydrated and take electrolytes most days. My blood pressure is on the low side (I often take medication to raise it).
My weight is good, but I feel the HCM keeps me from doing what most others can do easily.
Don’t get discouraged, keep cycling. Getting an e bike is in my future, couldn’t keep up without one.
My motto-“slow and steady wins the race”.
You’ve got this!
Best,
June in Upstate NY

junecc | @junecc | 5 days ago

Also, have your doctor measure your LPa-lipoprotein little a (it’s the inherited cholesterol you can’t change with diet). I’m on Repatha as mine was high.
As far as harm to your heart, that’s a question for your doctor.
I hardly think so, but best to ask them. Might ease your mind.

alwiedeman | @alwiedeman | 5 days ago

In reply to @johnwx "I am 66 years old and in the “obese” category at 254 lbs and 6’ 2”...." + (show)

How do you know or what is over hydration?

johnwx | @johnwx | 4 days ago

In reply to @alwiedeman "How do you know or what is over hydration?" + (show)

For me, it is frequent urination. Also, if I am feeling fatigued for no obvious reason, it may be my electrolytes (e.g low salt) are out of balance due to too much hydration. It is a real balancing act, and I have to be aware of my body.

alwiedeman | @alwiedeman | 4 days ago

I get the frequent urination ……. Before I was officially diagnosed I had cut back my consumption of water/soda/etc to cut down on nighttime urination, but after diagnosis I ramped up drinking water with the resulting frequent urination. It’s a vicious circle…..

johnwx | @johnwx | 4 days ago

In reply to @alwiedeman "I get the frequent urination ……. Before I was officially diagnosed I had cut back my..." + (show)

Yes, it sure is.

Part of me knows that I may need to have the procedure eventually if symptoms persist. For now, get healthy 😀

bgkelley | @bgkelley | 2 days ago

I take 25mg of metprolol twice daily and 10mg of amlodipine once per day. I have gained 15 pounds. Any suggestions to stop the weight gain? Thank you!