Living With Long QT Syndrome

Long QT syndrome (LQTS) usually is a lifelong condition. The risk of having an abnormal heart rhythm that leads to fainting or sudden cardiac arrest may lessen as you age. However, the risk never completely goes away.

You'll need to take certain steps for the rest of your life to prevent abnormal heart rhythms. You can:

• Avoid things that trigger abnormal heart rhythms
• Let others know you might faint or your heart might stop beating, and tell them what steps they can take
• Have a plan in place for how to handle abnormal heart rhythms

If an abnormal heart rhythm does occur, you'll need to seek treatment right away.

Avoid Triggers

If exercise triggers an abnormal heart rhythm, your doctor may tell you to avoid any strenuous exercise, especially swimming. Ask your doctor what types and amounts 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 exercise in public or with a friend who can help you if you faint.

Avoid medicines that can trigger an abnormal heart rhythm. This includes some medicines used to treat allergies, infections, high blood pressure, high blood cholesterol, depression, and arrhythmias. Talk 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, excessive 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 wear a medical ID necklace or bracelet that states that you have LQTS. This will help alert medical personnel and others about your condition if you have an emergency.

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 go into cardiac arrest. Tell them to call 9–1–1 right away if you faint.

Consider asking a family member and/or coworker to learn cardiopulmonary resuscitation (CPR) in case your heart stops beating.

You also may want to keep an automated external defibrillator (AED) with you at home or at work. This device uses electric shocks to restore a normal heart rhythm.

Someone at your home and/or workplace should be trained on how to use the AED, just in case your heart stops beating. If a trained person isn't available, an untrained person also can use the AED to help save your life.

If you have LQTS 3 and you sleep alone, you may want to have an intercom in your bedroom that's connected to someone else's bedroom. This will let others detect the noisy gasping that often occurs if you have an abnormal heart rhythm while lying down.

Ongoing Health Care Needs

You should see your cardiologist (heart specialist) regularly. He or she will adjust your treatment as needed. For example, if you still faint often while using less aggressive treatments, your doctor may suggest other treatment options.

Emotional Issues and Support

Living with LQTS may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with LQTS. You can see how other people have coped with the condition. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Some people learn they have LQTS because they're tested after a family member dies suddenly from LQTS. Grief counseling may help you cope if this has happened to you. Talk with your doctor about finding a grief counselor.

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