If you develop signs and symptoms of long QT syndrome, contact your doctor. After an initial exam, your doctor likely will refer you to a doctor trained in diagnosing and treating heart conditions (cardiologist), a doctor trained in heart rhythm conditions (electrophysiologist) or a cardiologist who specializes in genetic heart conditions (genetic cardiologist) that may predispose people to sudden death.
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 conditions 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 consult a specialist?
Questions to ask if you're 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?
Questions to ask if your doctor recommends surgery include:
- What type of procedure is most likely to be effective in my case and why?
- Where should I have my surgery performed?
- Should I be referred to a long QT syndrome center of excellence?
- What should I expect from my recovery and rehabilitation after surgery?
Additional questions include:
- 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 ahead of time, don't hesitate to ask other questions during your appointment if you don't understand something.
What to expect from your doctor
A doctor who sees you for possible long QT syndrome might 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 conditions 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 usual 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 (children, siblings, parents), second-degree relatives (aunts, uncles, grandparents), third-degree relatives (great aunts, great uncles, cousins) or any other known 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. In general, knowing as much as possible about your family's health history will help your doctor determine the 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 exercising until you see your doctor.