Living With Long QT Syndrome

Long QT syndrome (LQTS) is usually a lifelong condition. The risk of developing an irregular heartbeat that leads to fainting or sudden cardiac arrest may lessen as you age, but the risk never disappears. You need to take certain steps for the rest of your life to prevent an irregular heartbeat or to ensure that you get immediate treatment 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 irregular heartbeat

Avoid Triggers

If exercise triggers an irregular heartbeat, your doctor may recommend that you avoid any strenuous exercise, especially swimming. Ask your doctor which types of exercise are right for you. If you have a pacemaker or implantable cardioverter defibrillator you will need to avoid contact sports that may dislodge these devices. You may want to only exercise in public or with a friend who will help you if you faint.

Avoid medicines that may trigger an irregular heartbeat. These medicines include those used to treat allergies, infections, high blood pressure, high cholesterol, and depression. Consult with your doctor before you take any prescription, over-the-counter, or other drugs.

Seek medical care immediately for conditions that lower the potassium level in your blood. These conditions include excessive diarrhea, vomiting, or the eating disorder anorexia nervosa.

Avoid unexpected noises in your bedroom if you have LQTS 2. These noises include loud or jarring alarm clock buzzers and telephone ringers.

Inform Others

You may want to consider wearing a medical identification 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. Let these people know that they should get you emergency medical care immediately if you faint.

You may want to have someone in your family or office learn cardiopulmonary resuscitation (CPR) in case your heart stops beating. You also could 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 work should be trained 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 irregular heartbeat while lying down.

Ongoing Health Care Needs

You should see your cardiologist 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.

It can be stressful to have LQTS, or to have a family member with it. You may want to ask your doctor to recommend a LQTS support group.