Living with Dysautonomia (POTS)

Dysautonomia Clinic

at Advanced Pediatric Cardiology
Dr. Shabib Alhadheri, MD

A Patient Education Handout

What Is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects the autonomic nervous system — the part of your nervous system that automatically controls heart rate, blood pressure, breathing, digestion, temperature regulation, and circulation.

When someone with POTS moves from lying down to standing:

• The heart rate increases excessively
• Blood pools in the lower body, including the legs and abdomen.
• Less blood briefly returns to the heart and brain
• Symptoms develop

Importantly, in most patients:

• The heart structure is normal
• The condition is not life-threatening
• Symptoms are real and physiological

What Happens Inside the Body?

When a healthy person stands:

1. Gravity pulls blood downward.
2. Blood vessels tighten (constrict).
3. Heart rate increases slightly.
4. Blood flow to the brain remains stable.

In POTS:

• Blood vessels do not constrict properly.
• Blood pools in the lower extremities.
• The heart compensates by beating much faster.
• Symptoms occur due to reduced effective circulation.

Diagnostic Criteria (Simplified)

• Heart rate increases by 30 beats per minute or more within 10 minutes of standing
• In adolescents, an increase is typically 40 beats per minute or more
• Blood pressure usually does not drop significantly.

Common Symptoms

POTS symptoms can vary from mild to severe and may fluctuate day to day.

Cardiovascular Symptoms

• Rapid heartbeat (palpitations)
• Chest discomfort
• Exercise intolerance

Neurological Symptoms

• Dizziness
• Lightheadedness
• Near-fainting
• Brain fog
• Headache
• Difficulty concentrating

General Symptoms

• Fatigue (often profound)
• Weakness
• Shakiness
• Nausea
• Abdominal discomfort
• Temperature intolerance
• Poor sleep

What Can Trigger or Worsen Symptoms?

• Dehydration
• Heat exposure
• Prolonged standing
• Viral illness
• Large meals (especially high-carbohydrate meals)
• Menstrual cycles
• Stress
• Lack of sleep

Who Is Most Commonly Affected?

• Teenagers and young adults
• More common in females
• Often develops after viral illness

• May be associated with:

  • Hypermobility syndromes
  • Autoimmune conditions
  • Mast cell activation
  • Chronic fatigue

Is POTS the Same as Anxiety?

No.
While symptoms like a rapid heart rate can imitate anxiety, POTS is a physiological disorder involving autonomic regulation. Anxiety can occur alongside, but it is not the main cause of POTS.

How is POTS Treated?

There is no one-size-fits-all cure, but effective strategies can greatly improve symptoms.

1. Hydration

   • Aim for 2–3 liters of fluids daily (unless medically restricted).
   • Electrolyte solutions may help.
   • Avoid dehydration.

2. Salt Intake (If Approved by Your Doctor)

   • Increased sodium intake helps expand blood volume.
   • Typically 3–10 grams of sodium daily, tailored to the individual.

3. Compression Therapy

   • Waist-high compression stockings (20–30 mmHg).
   • Helps reduce blood pooling.

4. Exercise Rehabilitation

   • Start with recumbent exercises (rowing, recumbent bike, swimming).
   • Gradually increase duration and intensity.
   • Consistency is critical.
   • Improvement usually takes months.

5. Postural Techniques

   • Rise slowly from bed.
   • Avoid prolonged standing.
   • Contract leg muscles while standing.
   • Elevate the head of the bed slightly.

6. Nutrition

   • Small, frequent meals.
   • Avoid very large or high-carbohydrate meals.
   • Maintain a balanced protein intake.

7. Medications (If Needed)

   May include:

   • Fludrocortisone
   • Midodrine
   • Beta-blockers
   • Ivabradine
   • Pyridostigmine

Treatment is individualized based on symptoms and physiology.

What Is the Long-Term Outlook?

• Many adolescents improve significantly over time.
• Some patients achieve excellent symptom control.
• Early recognition and structured management improve outcomes.
• Patience and consistency are essential.

Improvement is gradual — typically measured in months, not days.

When Should You Seek Immediate Medical Attention?

• True fainting with injury
• Severe chest pain
• New neurological symptoms
• Persistent vomiting or inability to hydrate

Our Goal at the Dysautonomia Clinic

At the Dysautonomia Clinic at Advanced Pediatric Cardiology, our goal is:

• Accurate diagnosis
• Individualized treatment plans
• Education and reassurance
• Improved function and quality of life

We care for the entire patient — not only the heart rate.

Dysautonomia Clinic

Advanced Pediatric Cardiology
Dr. Shabib Alhadheri, MD
Phone: (480) 855-1339