How do I live with long QT syndrome?

Long QT syndrome (LQTS) usually is a lifelong condition. The risk of developing an abnormal heartbeat that leads to fainting or sudden cardiac arrest may lessen as you age, but the risk never disappears.

You'll need to take certain steps for the rest of your life to prevent abnormal heartbeats and to ensure that you get treatment right away if one occurs. These steps include:

• Avoiding things that trigger an abnormal heart rhythm
• Letting others know you might faint or your heart might stop beating, and what steps they can take
• Having a plan in place for when you develop an abnormal heartbeat

Avoid Triggers

If exercise triggers an abnormal heartbeat, your doctor may recommend that you avoid any strenuous exercise, especially swimming. Ask your doctor about which types of exercise are safe for you.

If you have a pacemaker or implantable cardioverter defibrillator, avoid contact sports that may dislodge these devices. You may want to only exercise in public or with a friend who can help you if you faint.

Avoid medicines that may trigger an abnormal heartbeat. This includes some medicines used to treat allergies, infections, high blood pressure, high blood cholesterol, and depression. Consult with your doctor before taking any prescription, over-the-counter, or other medicines or drugs.

Seek medical care right away for conditions that lower the sodium or potassium level in your blood. These conditions include the eating disorders anorexia nervosa and bulimia, excess vomiting or diarrhea, and certain thyroid disorders.

If you have LQTS 2, try to avoid unexpected noises, such as loud or jarring alarm clock buzzers and telephone ringers.

Inform Others

You may want to consider wearing a medical ID necklace or bracelet that states that you have LQTS.

Let your roommates, coworkers, or other people with whom you have regular contact know that you have a condition that might cause you to faint or your heart to stop beating. Tell them to call 9–1–1 right away if you faint.

You may want to ask someone in your family or office to learn cardiopulmonary resuscitation (CPR) in case your heart stops beating.

This answer from the National Heart, Lung and Blood Institute has been reviewed and/or edited by Dr. William D. Knopf.