Asking your doctor about symptoms, treatment, outlook expectations, and possible lifestyle changes can help you manage hypertrophic cardiomyopathy (HCM).

Hypertrophic cardiomyopathy (HCM) is a type of heart condition that causes the walls of the heart’s main pumping chamber (left ventricle) to abnormally thicken and enlarge.

This can make the heart muscle less flexible and decrease its ability to take in and pump out blood as it beats.

HCM is a chronic (lifelong) condition, so it’s important to stay in touch with your doctor and other members of your healthcare team.

Consider the following questions to help you get the conversation started.

What kind of doctor treats HCM?

Your healthcare team for HCM may comprise a wide range of people who can provide support. These may include:

  • primary care physicians (PCP)
  • pediatricians (for people up to 18 years old)
  • medical specialists, such as cardiologists, radiologists, and surgeons
  • nurses
  • pharmacists

If you have a medical history of HCM or are experiencing symptoms, your first point of contact should be a PCP. They can assess your symptoms and medical history.

If they think you need further testing, they’ll refer you to a cardiologist, a medical specialist who manages conditions that affect the heart and blood vessels.

The cardiologist will order diagnostic tests, develop a treatment plan, and schedule regular HCM check-ups with you to monitor your condition.

Experts estimate that 1 in 500 people in the United States have HCM, but some people don’t even know they have this condition.

HCM is most often hereditary. Around 6 in 10 people have HCM due to mutations in the sarcomere protein genes, which play a role in how the heart muscle contracts. This leads to enlargement and thickening of the left ventricle.

HCM is a type of heart disease that can run in families. Around 1 in 4 people with HCM due to genetic mutations have a first-degree relative (biological parent or sibling) with HCM.

Although HCM is less common in children than in adults, newborns and children have a higher risk of developing life threatening complications.

If you’re living with HCM and have children, consider speaking with a healthcare professional about testing for HCM. Early diagnosis can be key to managing the condition, especially since not all children with HCM have symptoms.

You may also wish to discuss your diagnosis with your parents or siblings so they can talk with their doctors, too.

The American Heart Association (AHA) and American College of Cardiology recommend genetic testing for children and family members of someone with HCM every 2 to 3 years, as HCM can develop at any age.

There are two types of HCM:

  • Obstructive HCM: This is the most common type, affecting two-thirds of people with HCM. It occurs when the left ventricle thickens to the point that blood flow through the aorta, the heart’s primary artery, is obstructed.
  • Nonobstructive HCM: This means you may have thickening in the heart muscle, but it has not developed to a point where blood flow is blocked.

HCM doesn’t always cause symptoms, which is why some people may not realize they have this heart condition until a doctor finds it. In fact, only around 1 in 2 people with HCM experience symptoms.

When symptoms do occur, they may be mild at first, or they might develop over time as your condition progresses. Symptoms may include:

  • irregular heartbeat (arrhythmia)
  • chest pain
  • fatigue
  • shortness of breath
  • dizziness or fainting
  • swelling in your abdomen or lower extremities

The primary goal of HCM treatment is to reduce symptoms and prevent complications. This is mostly the case in obstructive HCM.

HCM treatment options may include:

  • heart-rate-lowering medications, such as beta-blockers or calcium channel blockers
  • mavacamten (Camzyos), a medication approved by the Food and Drug Administration (FDA) for treating obstructive, symptomatic HCM
  • implantable cardioverter-defibrillator (ICD), a device used to monitor and treat potentially dangerous arrhythmias
  • surgery, such as surgical myectomy, alcohol septal ablation, or coronary bypass surgery

It’s possible to experience side effects from certain medications used to treat HCM.

For instance, heart-rate-lowering medications like beta-blockers may cause:

  • dizziness
  • headaches
  • stomach discomfort
  • swelling in your lower extremities
  • fatigue
  • erectile dysfunction

Dizziness and fainting are also possible side effects of taking mavacamten (Camzyos). In rare cases, this drug may cause heart failure.

Since these side effects are similar to HCM symptoms, it’s important to report any new symptoms to your care team. They can help determine whether it’s a medication side effect or a sign that your HCM is progressing.

Also, don’t stop taking prescription medications without discussing them with your care team first. HCM treatments are important in reducing your risk of potentially life threatening complications like heart attack and stroke.

Surgery is only considered if you’re experiencing severe symptoms of heart failure resulting from HCM, despite medical treatment.

A doctor may recommend an invasive type of surgery called septal myectomy if you have significant obstruction and your symptoms don’t improve with medications and lifestyle changes. This is an open-heart surgery, where a surgeon will directly access your heart to remove part of the thickened heart muscle.

Another type of surgery for HCM is alcohol septal ablation, which is a less invasive treatment. During the procedure, a catheter is threaded into the heart, and alcohol is injected to cause scarring and reduce the size of the thickened septum.

A heart transplant might only be considered if you have end stage heart disease.

In addition to treatment, your doctor may recommend dietary and exercise modifications.

From a dietary standpoint, they may recommend eating more plant-based foods and limiting sugar, saturated fats, and added salt. You might also consider eating a Mediterranean diet, which focuses on fruits and vegetables, whole grains, olive oil, and fish.

A regular exercise program is also considered part of a heart-healthy lifestyle.

According to the AHA, most people with HCM should get at least 150 to 300 minutes of light to moderate intensity activity weekly. This is an activity that targets up to 70% of your maximum heart rate, or 6 METs.

Some people who don’t have symptoms may also enjoy high intensity exercise or playing competitive sports, but it’s important to consult with a doctor beforehand, as this is associated with life threatening complications.

Along with dietary and exercise changes, the AHA recommends avoiding dehydration. This may include limiting your exposure to hot and humid environments and drinking enough water daily.

You may benefit from other lifestyle changes that can help your heart as well as your overall health. These may include:

The life expectancy for most people with HCM is similar to that of those who don’t have the condition, according to the AHA.

However, some people may have a higher risk of developing complications that could lead to early mortality. A 2022 study found that early mortality in HCM was related to comorbidities (coexisting health conditions) or complications like stroke, heart attack, or heart failure.

It’s important to work closely with your healthcare team to assess your risk of complications and to follow your management plan properly.

HCM is a heart condition that causes the walls of the left ventricle to thicken, which may obstruct blood flow.

If you have a first-degree relative with HCM or experience symptoms like arrhythmia, chest pain, and fatigue, speak with a PCP. They can assess your symptoms and medical history, and refer you to a cardiologist for testing and, if necessary, treatment.