It’s important to know how to respond to different symptoms when you have hypertrophic cardiomyopathy (HCM). While calling your doctor may be appropriate for some issues, severe symptoms may require emergency medical attention. Having a plan in place can protect your health — and help you feel more in control.
Everyday Health
When to Call Your Doctor
You may sometimes feel as though you can push through your HCM symptoms or wait until your next scheduled appointment. But if you notice your symptoms are only getting worse, it’s time to call the doctor, says Ryan Gindi, MD, a cardiologist with Henry Ford Health in Detroit.
Worsening symptoms may include:
New or worsening shortness of breath when you exert yourself (including during exercise or daily activities such as walking or climbing the stairs)
Sudden weight gain, such as 4.5 pounds (lb) or more in a few days
Other, less-concerning symptoms can wait until your next follow-up appointment, Dr. Gindi says. If you notice any of the following, write them down and bring your list to your next cardiology visit.
Mild fatigue that isn’t getting worse
Exercise intolerance that hasn’t changed from what you consider normal, or your baseline
Occasional heart palpitations, as long as they’re not also causing lightheadedness, dizziness, chest pain, or new shortness of breath
Intermittent shortness of breath when you exert yourself that hasn’t worsened from what you typically feel
When to Seek Emergency Treatment
Severe symptoms, such as those resembling a heart attack, require emergency medical attention when you have HCM.
“Ignoring these symptoms can lead to potentially dangerous complications such as life-threatening arrhythmias, heart failure decompensation [a sudden, severe worsening of heart failure], or even stroke,” says Kevin Shah, MD, cardiologist and program director of heart failure outreach at MemorialCare Heart and Vascular Institute at Long Beach Medical Center in Long Beach, California.
Call 911 right away if you or a loved one with HCM has symptoms that include:
Irregular or rapid heartbeat for more than a few minutes
Fainting
Chest pain or pressure that’s severe, persistent, or doesn’t go away
Other heart attack symptoms such as sweating, nausea or vomiting, pain or pressure in the back, neck, jaw, upper abdomen, shoulders, or arms
How to Stay on Top of Your Symptoms
There are other things you can do to make sure you’re prepared for HCM symptom changes.
Create an Action Plan
Collaborate with your cardiologist on an action plan that gives you a roadmap for what you should do in different symptom scenarios.
“A personalized plan helps patients understand what can be monitored at home, what should trigger a call to their cardiology team, and what requires emergency care,” Dr. Shah says.
Keep a Journal
Jotting down your symptoms in a notebook or your phone’s Notes app can make it easier to notice when changes occur, Gindi says. He recommends keeping track of things such as your exercise tolerance and instances of chest pain, palpitations, lightheadedness, and dizziness.
Involve Others
Enlist the people you spend time with — such as family, friends, and coworkers — to help you plan for emergency situations.
“Others should know the basics of what to do if the patient collapses, has severe symptoms, or becomes unresponsive,” Shah says. “In some situations, it may also be appropriate to discuss CPR (cardiopulmonary resuscitation) training or AED (automated external defibrillator) availability in the workplace or community.”
A friend who understands your condition can get help for you faster, by informing emergency medical personnel or possibly by using an app or website to locate a nearby AED.
Keep an Updated Medications List
Write down all of the medications and dosages you take, including prescription and over-the-counter drugs and supplements. Keep a few copies in easily accessible places such as on the kitchen refrigerator, in your car’s glove compartment, or at your desk at work so it’s easy to find during an emergency. Bring the list with you to your cardiology appointments, too, so you and your doctor can review it.
A MedicAlert bracelet or a similar ID can help others know of your health situation in emergencies.
Decide on a Follow-Up Schedule
Talk with your cardiologist about how often you should come in for follow-up visits — and stick with the plan. Typically, if you have stable symptoms, you will have a heart imaging test called an echocardiogram every one to two years and your heart rhythm checked at least annually.
Your doctor may request more frequent visits based on your symptoms, age, and how severe your HCM is.
The Takeaway
Always take hypertrophic cardiomyopathy (HCM) symptoms seriously and treat severe symptoms that resemble the beginning of a heart attack as emergencies.
Call your doctor right away if you notice symptoms such as shortness of breath, swelling, or fatigue quickly worsening, as they may be the result of a complication.
Call 911 if you have severe or persistent chest pain, an irregular heartbeat for more than a few minutes, or heart attack symptoms such as sweating, nausea, and pain.
Planning ahead for HCM symptoms by keeping a journal, educating friends and family about your condition, and ensuring your medications list is updated can help you get the right care in an emergency.
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Ommen SR et al. 2024 AHA/ACC/AMSSM/HRS/PACES/SCMR Guideline for the Management of Hypertrophic Cardiomyopathy: A Report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Practice Guidelines. Circulation. May 8, 2024.
Chung Yoon, MD, is a noninvasive cardiologist with a passion for diagnosis, prevention, intervention, and treatment of a wide range of heart and cardiovascular disorders. He enjoys clinical decision-making and providing patient care in both hospital and outpatient settings. He excels at analytical and decision-making skills and building connection and trust with patients and their families.
Marygrace Taylor is an award-winning freelance health and wellness writer with more than 15 years of experience covering topics including women’s health, nutrition, chronic conditions, and preventive medicine. Her work has appeared in top national outlets like Prevention, Parade, Women’s Health, and O, The Oprah Magazine.
She's also the coauthor of three books: Eat Clean, Stay Lean: The Diet, Prevention Mediterranean Table, and Allergy-Friendly Food for Families. She lives in Philadelphia.
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