Self-management

Lifestyle and home remedies

Once you've been diagnosed with long QT syndrome, several steps can help you avoid serious consequences, including:

  • Don't overexert yourself. You might not need to give up sports if you have long QT syndrome. Your doctor might permit recreational activities as long as you have a buddy along in case you have a fainting episode. In general, people with long QT syndrome should never swim alone.

    Strenuous exercise might be dangerous and isn't recommended for some people with long QT syndrome. However, others might have a lower risk of complications and may be able to continue strenuous exercise and even competitive sports. Discuss this issue with your doctor in detail.

  • Know your symptoms. Be fully aware of symptoms that can warn you of irregular heart rhythms and decreased blood flow to your brain, such as feeling like you may faint.
  • Inform other people. Make family, friends, teachers, neighbors and anyone else who has regular contact with you aware of your heart condition. Wear a medical alert identification to notify health care providers of your condition.
  • Have plans in case of an emergency cardiac event. Family members may want to learn cardiopulmonary resuscitation (CPR) so they can provide immediate resuscitation if you ever need it. In some situations, it might be appropriate to have or be able to rapidly access an automatic external defibrillator (AED).

    However, if your inherited long QT syndrome has been evaluated and treated carefully, you are generally unlikely to ever need CPR or an AED.

  • Control startling events as much as possible. Turn down the volume on doorbells and turn off the telephone ringer or your cellphone at night.
  • Visit your doctor. Your cardiologist will likely recommend that you have regular follow-up appointments with him or her. Let your doctor know if you have symptoms of long QT syndrome or any changes in your condition. Your doctor may make changes to your treatment plan or suggest additional treatments for you.

Sexual intercourse doesn't appear to increase the risk of long QT syndrome. Pregnancy and delivery aren't associated with an increased risk of symptoms in women with long QT syndrome.

Still, if you have inherited long QT syndrome, your doctor will want to monitor you closely both during your pregnancy and after. Women with long QT syndrome, especially a form called LQT2, are at increased risk during the period following delivery and need careful monitoring.

Coping and support

Long QT syndrome can be a worrisome condition because of its serious potential outcomes. Worrying about possible fatal heart rhythms can obviously be stressful for you and your family.

Families with inherited long QT syndrome might find it helpful to talk to a cardiologist with expertise in long QT syndrome, a genetics counselor and a therapist, as well as other families with the condition.

Prevention

If you have inherited long QT syndrome, be careful about which medications you take. Some medications — including certain appetite suppressants, decongestants and common antibiotics — might trigger dangerous heart rhythms. Ask your doctor what you can and can't take safely. Illegal drugs, such as cocaine and amphetamines, pose a serious risk for people with long QT syndrome.

In addition, seek medical treatment right away for illnesses that could result in low blood-potassium levels, especially if you have a lot of vomiting and diarrhea. Such illnesses could trigger an episode of long QT syndrome. Your doctor might advise you not to take some drugs, such as diuretics, that lower blood-potassium levels.

Some people — especially older adults with long QT syndrome who haven't had signs or symptoms of the condition in decades — may not need any treatment other than preventive measures.