Long QT Syndrome in Grand Rapids, MI

Long QT syndrome (LQTS) is an electrical condition of the heart that affects the way your heart beats. It can cause fast, erratic heart rhythms (arrhythmias), especially during exercise, sudden loud noises, or times of strong emotion. These abnormal rhythms can lead to:

  • Fainting (syncope)
  • Seizures
  • In rare cases, sudden cardiac death

Long QT syndrome is a relatively common cause of sudden death in children and young adults. Because it can be silent, it’s important for Grand Rapids families to understand the condition and know when to seek care from local cardiology specialists at Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health.

How Long QT Syndrome Is Diagnosed

Long QT syndrome is usually diagnosed with an electrocardiogram (ECG or EKG), a simple test that records the electrical activity of your heart.

In Grand Rapids, ECG testing is available through:

  • Hospital cardiology departments (Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health)
  • Many outpatient cardiology clinics
  • Some urgent care centers and primary care offices

If your ECG suggests long QT syndrome, you may be referred to a heart rhythm specialist (electrophysiologist) in West Michigan for further evaluation and possible genetic testing.

Many People Have No Symptoms

About one third of people with long QT syndrome have no symptoms

Some people with long QT syndrome never feel anything unusual, and the condition is only discovered:

  • During a routine ECG
  • After a family member is diagnosed
  • During evaluation for fainting or seizures

You should be evaluated for long QT syndrome if:

  • There is a family history of long QT syndrome
  • There is a history of unexplained fainting, seizures, or sudden death in your family, especially at a young age

If this applies to you, talk with your primary care provider or a cardiologist in Grand Rapids. The Kent County Health Department and Grand Rapids Public Health can also help connect you with local cardiac specialists.

Types of Long QT Syndrome

There are two main types of long QT syndrome:

  1. Inherited long QT syndrome
  2. Acquired long QT syndrome

Inherited Long QT Syndrome

Inherited long QT syndrome is caused by changes (mutations) in certain genes that control the heart’s electrical system. Researchers have identified more than 15 genes associated with LQTS, and more are being discovered.

Two main inherited forms include:

Romano-Ward Syndrome

  • The most common inherited form of long QT syndrome
  • Does not cause hearing loss
  • Often follows an autosomal dominant inheritance pattern

Jervell and Lange-Nielsen Syndrome

  • A rare form of long QT syndrome
  • Causes both long QT syndrome and congenital deafness
  • Usually more severe and often diagnosed in childhood

Genetic testing for inherited long QT syndrome is available through cardiology and genetics clinics in Michigan, including services in the Grand Rapids area.

Acquired Long QT Syndrome

Acquired long QT syndrome develops when something outside your genes affects the heart’s electrical system. Common causes include certain:

  • Heart rhythm medications (antiarrhythmics)
  • Antibiotics
  • Antidepressants
  • Antipsychotics
  • Anti-nausea medications
  • Some diuretics (water pills) and other drugs that affect electrolytes

In some cases, stopping or changing the medication can prevent further symptoms. In other cases, additional treatment is still needed.

If you live in Grand Rapids and are prescribed new medications, especially if you already have long QT syndrome or a family history of it, always tell your doctor and pharmacist. Local health systems in West Michigan often use electronic alerts to flag medications that may prolong the QT interval.

How Long QT Syndrome Is Inherited

Autosomal Dominant Inheritance

Most inherited forms of long QT syndrome follow an autosomal dominant pattern:

  • “Dominant” means only one copy of the changed gene is needed to cause the condition
  • “Autosomal” means the gene is on a non-sex chromosome, so it affects males and females equally

If you have long QT syndrome:

  • Each child has a 50% chance of inheriting the changed gene in every pregnancy, regardless of the child’s sex

Sometimes, the gene change happens for the first time in a child (a de novo mutation), even when parents do not carry it.

Genetic testing for long QT syndrome often starts by checking several of the most common genes known to cause the condition.

Genetic Testing and Family Screening in Grand Rapids

If you are diagnosed with long QT syndrome:

  • Your biological family members (parents, siblings, children) should be encouraged to see a cardiologist for evaluation
  • They may need an ECG, additional heart tests, and possibly genetic testing

In the Grand Rapids and West Michigan area, genetic testing and counseling may be available through:

  • Hospital-based genetics or cardiogenetics clinics (e.g., Spectrum Health or Trinity Health Grand Rapids)
  • Regional genetics services and university-affiliated clinics in Michigan

Ask your cardiologist or primary care provider for a referral to a genetic counselor experienced in inherited heart conditions.

Event Triggers for Long QT Syndrome

Many serious events in long QT syndrome are triggered by:

  • Exercise, especially intense activity
  • Strong emotions, such as anger, fear, or crying
  • Being startled by a loud noise, such as:
    • Alarm clocks
    • Phone rings
    • Car horns
  • Stressful situations, such as exams, tests, or major life stress

In Grand Rapids, seasonal factors can also play a role. Cold Michigan winters and sudden exertion in the cold (like shoveling snow or rushing outdoors) can stress the heart. Always follow your cardiologist’s guidance about safe levels of activity, especially in extreme weather.

Warning Signs of Long QT Syndrome

Talk to your doctor or a Grand Rapids cardiologist right away if you notice:

  • Fainting for no clear reason
  • Fainting during or shortly after exercise
  • Fainting during emotional excitement (such as anger, fear, or intense stress)
  • A family history of unexplained fainting, seizures, or sudden death, especially at a young age

If someone collapses and does not respond, call 911 immediately. In public places around Grand Rapids (schools, gyms, churches, malls), look for an AED (automated external defibrillator) and use it as instructed.

Treatment Options for Long QT Syndrome

Treatment aims to reduce the risk of dangerous heart rhythms and sudden death.

Medications

  • Beta blockers are the main treatment for many people with long QT syndrome
  • They help control the heart’s response to stress and adrenaline
  • Beta blockers are effective for about 90% of people with LQTS

These medications are commonly prescribed and monitored by cardiologists throughout Grand Rapids.

Implantable Cardioverter-Defibrillators (ICDs)

For some patients, especially those who:

  • Have had life-threatening arrhythmias
  • Do not respond well to beta blockers
  • Have very high-risk genetic forms of LQTS

An implantable cardioverter-defibrillator (ICD) may be recommended. An ICD is a small device placed under the skin that:

  • Continuously monitors your heart rhythm
  • Delivers a shock if it detects a dangerous arrhythmia
  • Helps prevent sudden cardiac death

ICD implantation is performed in hospital electrophysiology labs, such as those at Spectrum Health or other major Grand Rapids hospitals.

Lifestyle and Activity Changes

Your cardiologist may also recommend:

  • Avoiding or limiting strenuous exercise or competitive sports, depending on your specific risk
  • Avoiding sudden loud alarms when possible
  • Carefully reviewing all medications with your healthcare team
  • Maintaining healthy electrolyte levels (for example, avoiding severe dehydration, which can be more common in hot Michigan summers or during illness)

Medications to Avoid

If you have long QT syndrome, always:

  • Tell every doctor, dentist, and pharmacist you see in Grand Rapids or elsewhere
  • Ask whether any new medication might prolong the QT interval

There are regularly updated lists of medications that can affect the QT interval, including:

  • Certain antiarrhythmic drugs
  • Some antibiotics
  • Some antidepressants
  • Some antipsychotics
  • Some anti-nausea medications
  • Some diuretics and other drugs that alter potassium, magnesium, or calcium levels

Your local cardiologist can direct you to reliable online resources and provide a personalized list of drugs to avoid.

Genetic Counseling for Long QT Syndrome in Michigan

If you or your child has been diagnosed with long QT syndrome, or if it runs in your family, speaking with a genetic counselor can be very helpful.

Genetic counselors:

  • Are trained in both genetics and counseling
  • Provide emotional support and clear explanations
  • Help you understand:
    • What long QT syndrome is and what causes it
    • How it is inherited
    • What a diagnosis means for your health and your child’s development
    • Your options for family planning and prenatal testing

They are sensitive to family circumstances, culture, and beliefs.

In Michigan, resources include:

  • Hospital-based genetics programs (check with Spectrum Health, Trinity Health Grand Rapids, or other major systems)
  • Statewide organizations such as the Genetic Support Network of Michigan (GSNM)
  • National registries like the American Genetic Heart Disease Registry, which can connect you with other families affected by long QT syndrome

Ask your Grand Rapids cardiologist or primary care provider for a referral to a local or regional genetic counseling service.

Living With Long QT Syndrome in Grand Rapids

With proper diagnosis and treatment, many people with long QT syndrome live active, full lives. In West Michigan, you have access to:

  • Advanced cardiology and electrophysiology care
  • Genetic testing and counseling services
  • Community resources through Kent County Health Department and Grand Rapids Public Health
  • Support groups and online communities for families managing inherited heart conditions

Regular follow-up with your cardiologist, careful medication review, and attention to triggers are key parts of staying safe.

Where to Get Help in Grand Rapids, MI

If you are concerned about long QT syndrome, start with:

  • Your primary care provider (GP or family doctor)
  • A cardiologist or electrophysiologist at:
    • Spectrum Health
    • Trinity Health Grand Rapids
    • Metro Health
    • Mercy Health

You can also ask for referrals to:

  • Genetic counselors
  • Cardiogenetics clinics
  • Michigan-based support organizations for inherited heart diseases

In an emergency (fainting, seizure, or collapse), call 911 immediately.

Key Points About Long QT Syndrome

  • About one third of people with long QT syndrome have no symptoms
  • There are two main types: inherited long QT syndrome and acquired long QT syndrome
  • Jervell and Lange-Nielsen syndrome is a rare inherited form that also causes deafness
  • Some cases of acquired long QT syndrome improve when the offending medication is stopped
  • In other cases, additional treatment such as beta blockers or an ICD may be required

If you live in the Grand Rapids area and have concerns about long QT syndrome for yourself or your family, talk with your healthcare provider. Early diagnosis and treatment can be life-saving.