If you develop signs and symptoms common to long QT syndrome, call your doctor. After an initial examination, it's likely that the doctor will refer you to a doctor who specializes in the diagnosis and treatment of heart conditions (cardiologist) or a heart rhythm specialist (electrophysiologist).
Here's some information to help you prepare for your appointment, and what to expect from your doctor.
What you can do
- Write down any signs and symptoms you've had, and for how long.
- Write down your key medical information, including any other health problems and the names of all of your medications. It will also be important to share any family history of heart disease or sudden death with your doctor.
- Find a family member or friend who can come with you to the appointment, if possible. Someone who accompanies you can help remember what the doctor says.
- Write down the questions you want to be sure to ask your doctor.
Questions to ask the doctor at your initial appointment include:
- What is likely causing my signs and symptoms?
- Are there any other possible causes for these signs and symptoms?
- What tests are needed?
- Should I see a specialist?
Questions to ask if you are referred to a cardiologist or electrophysiologist include:
- Do I have long QT syndrome? What type?
- What is my risk of complications from this condition?
- What treatment approach do you recommend?
- If the first treatment doesn't work, what will you recommend next?
- If you're recommending medications, what are the possible side effects?
- If you're recommending surgery, what type of procedure is most likely to be effective in my case? Why?
- What should I expect from my recovery and rehabilitation after surgery?
- Will I need frequent exams and lifelong treatment for this condition?
- What emergency signs and symptoms of long QT syndrome should I be aware of?
- Should I tell my friends, teachers and co-workers that I have this condition?
- What activity restrictions will I need to follow?
- Could any dietary changes help me manage this condition?
- What medicines should I avoid?
- What is my long-term outlook with treatment?
- Will it be safe for me to become pregnant in the future?
- What is the risk that my future children would have this defect?
- Should I meet with a genetic counselor?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment if you don't understand something.
What to expect from your doctor
A doctor or cardiologist who sees you or your child for possible long QT syndrome may ask a number of questions, including:
- What are your symptoms?
- When did you first begin experiencing symptoms?
- Have your symptoms gotten worse over time?
- Do strong emotions trigger your symptoms, such as excitement, anger or surprise?
- Does exercise bring on your symptoms?
- Does being startled — such as by a doorbell or phone ringing — trigger your symptoms?
- Do your symptoms include feeling lightheaded or dizzy?
- Have you ever fainted?
- Have you ever had a seizure?
- Do your symptoms include a fluttering sensation in your chest?
- Do you gasp in your sleep that you're aware of?
- Have you been diagnosed with any other medical conditions?
- Are you aware of any history of heart problems in your family?
- Have any first-degree relatives — parent, sibling or child — ever died unexpectedly, such as from drowning, or died suddenly without explanation?
- What medications are you currently taking, including over-the-counter and prescription drugs as well as vitamins and supplements?
- Have you ever used recreational drugs? If so, which ones?
- What is your typical daily diet?
- Do you use caffeine? How much?
- Do you have any children? Are you planning any future pregnancies?
What you can do in the meantime
While you wait for your appointment, check with your family members to find out if any first-degree relatives have been diagnosed with heart disease or have died suddenly. Having a first-degree relative who died from an unexpected cause — such as from SIDS, from drowning or while driving — is an important clue for your doctor. And in general, knowing as much as possible about your family's health history will help your doctor determine next steps for your diagnosis and treatment.
A nonprofit advocacy organization called the Sudden Arrhythmia Death Syndromes (SADS) Foundation can help you prepare and understand your family history as it relates to a possible diagnosis of LQTS.
If exercise makes your symptoms worse, avoid exerting yourself physically until you've been seen by your doctor.
April 20, 2012
- Ackerman MJ, et al. Congenital long QT syndrome. In: Gussak I, et al. Electrical Diseases of the Heart; Genetics, Mechanisms, Treatment, Prevention. New York, N.Y.: Springer; 2008:462.
- Long QT syndrome. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/dci/Diseases/qt/qt_whatis.html. Accessed Feb. 10, 2012.
- Long QT syndrome. Heart Rhythm Society. http://www.hrsonline.org/PatientInfo/HeartRhythmDisorders/IDisorders/index.cfm. Accessed Feb. 10, 2012.
- Madias C, et al. Acquired long QT syndrome from stress cardiomyopathy is associated with ventricular arrhythmias and torsades de pointes. Heart Rhythm. 2011;8:555.
- Mauriello DA, et al. Holter monitoring in the evaluation of congenital long QT syndrome. Pacing & Clinical Electrophysiology. 2011;34:1100.
- Berul CI, et al. Acquired long QT syndrome. http://www.uptodate.com/index. Accessed March 9, 2012.
- Barsheshet A, et al. Genotype-specific QT correction for heart rate and the risk of life-threatening cardiac events in adolescents with congenital long-QT syndrome. Heart Rhythm. 2011;8:1207.
- Seslar SP, et al. Diagnosis of congenital long QT syndrome. http://www.uptodate.com/index. Accessed March 9, 2012.
- Anand RG, et al. The role of fish oil in arrhythmia prevention. Journal of Cardiopulmonary Rehabilitation and Prevention. 2008;28:92.
- Farnsworth MM, et al. When I go in to wake them ... I Wonder: Parental perceptions about congenital long QT syndrome. Journal of the American Academy of Nurse Practitioners. 2006;18:284.
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