Living 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.

You also may want to keep an automatic external defibrillator with you at home or at work. This device uses electrical shocks to restore your heartbeat to normal. Someone at your home or workplace should be trained on how to use the device if your heart stops beating.

If you have LQTS 3 and you sleep alone, you may want to have an intercom in your bedroom connected to someone else's bedroom. This will let others detect the noisy gasping that often occurs if you develop an abnormal heartbeat 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 recommend other options to better prevent the abnormal heart rhythms you're having.

Emotional Issues and Support

Living with LQTS may cause fear, anxiety, depression, and stress. It's important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

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 to 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 when they're tested after a family member has died suddenly from LQTS. Grief counseling may help you cope if this has happened to you. Talk to your doctor about how to find a grief counselor.