Cardiomyopathy (weak or thickened heart muscle)

Overview

Hypertrophic cardiomyopathy often runs in families and can cause sudden collapse during sports.

Treatment helps the heart work better and prevents dangerous rhythms.

Symptoms

Common signs:

• Shortness of breath
• Swollen legs

Less common

• Tiredness
• Fainting with exercise
• Racing heart

When to get medical care

Causes

Genes, heart attacks, high blood pressure, alcohol, viruses, some cancer treatments.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.
• It can run in families. Tell your doctor if a parent, brother, or sister has it.

Who is more likely to get it

• Family history
• Heavy alcohol

Possible complications

• Heart failure
• Sudden cardiac arrest

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Echocardiogram:
• ECG:
• Heart MRI:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Take heart medicines every day
• Limit salt and fluids if told
• Weigh yourself daily
• Avoid alcohol

Medicines

Medicines that may help:

OwieClear doesn't give doses: follow the label or your healthcare professional. Medicine names here are examples, not a full list.

Prevention

To lower your risk or catch problems early:

• Limit alcohol
• Control blood pressure

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a cardiologist (heart doctor).

Living with it

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Don't smoke or vape, and avoid secondhand smoke.
• Ask about cardiac or pulmonary rehab programs.
• Get flu, COVID-19, and pneumonia vaccines as advised.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Support groups and helplines

• American Heart Association: Plain-language heart information and a support network for patients.
• Muscular Dystrophy Association (MDA): Care centers and support for neuromuscular diseases.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

Children, pregnancy, and older adults

• Families: Relatives of people with genetic types should be screened.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• This condition needs closer checkups during pregnancy. Plan ahead with your doctor.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Many people live full lives with treatment.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Cardiomyopathy (weak or thickened heart muscle)