Postural Orthostatic Tachycardia Syndrome (POTS)An Educational Primer for Patients and Clinicians

What is POTS?

POTS is a form of dysautonomia, which means it involves dysfunction of the autonomic nervous system (ANS) — the system that controls “automatic” body functions like heart rate, circulation, blood pressure, temperature regulation, digestion, sweating, etc. In POTS, one of the hallmark features is an excessively large increase in heart rate when moving from a lying or seated position to standing. This increase occurs without a drop in blood pressure large enough to call it orthostatic hypotension. Best Practice+3PMC+3Johns Hopkins Medicine+3

Key features:

• Orthostatic intolerance: symptoms worsen on standing, improve when supine. PMC+2Johns Hopkins Medicine+2

• A sustained heart rate (HR) increase: in adults, ≥ 30 beats per minute (bpm) within 10 minutes of upright posture; in adolescents (age 12-19), ≥ 40 bpm. PMC+1

• Absence of a significant drop in blood pressure (i.e. absence of orthostatic hypotension). PMC+1

POTS can begin suddenly or gradually. It most often affects adolescent girls and young adult women, though males and older people can also have it. PMC+1

Symptoms

Because the autonomic nervous system influences many organ systems, symptoms are varied and often multi-systemic. Common symptoms include:

• Lightheadedness, dizziness (especially when standing), sometimes fainting (syncope or near-syncope) PMC+1

• Palpitations (feeling heart racing), tremulousness Johns Hopkins Medicine+1

• Fatigue, exercise intolerance (worsening with upright posture) Johns Hopkins Medicine+2PMC+2

• Brain fog / difficulty concentrating, blurred vision Johns Hopkins Medicine+1

• Headaches, migraines PMC+1

• Gastrointestinal symptoms (nausea, bloating, sometimes alternating constipation/diarrhea) PMC+1

• Heat intolerance, sweating changes, feeling cold or hot easily PMC+1

• Sometimes symptoms of joint hypermobility, other overlapping conditions (e.g. mast cell activation disorders) American College of Cardiology+1

Symptoms are often worse in the morning, after meals, during prolonged standing, in heat, and may fluctuate day to day. PMC+1

Diagnosis

Diagnosing POTS involves a combination of:

1. History & physical exam

   • Asking about orthostatic symptoms ­– when they began, how they worsen with standing, triggers, duration.

   • Exam for signs of autonomic dysfunction. May include checking for hypermobility (e.g. Ehlers-Danlos), checking vascular tone, skin changes. PMC+1

2. Orthostatic vital signs

3. Measure HR and blood pressure after lying supine/resting (5-10 min), then after standing at intervals (1, 3, 5, up to 10 min). PMC+1

4. Look for sustained HR increase as above, without a fall in blood pressure beyond thresholds for orthostatic hypotension. PMC+1

5. Tilt table test (head-up tilt)

6. Often used especially if the standing test is equivocal or if more detailed monitoring is needed. Johns Hopkins Medicine+1

7. Other tests

8. Laboratory work to exclude other causes: anemia, dehydration, thyroid dysfunction, infections, medications, fever etc. PMC+1

9. Autonomic function tests: heart rate variability, sweat tests, QSART (quantitative sudomotor axon reflex test), skin biopsy (for small fiber neuropathy) in some cases. Cleveland Clinic+1

10. Duration of symptoms

11. Symptoms need to be chronic (≥ 3 months) for many diagnostic criteria. PMC

12. Exclude other causes

13. Many other conditions can cause orthostatic tachycardia (or mimic it): dehydration, medications, endocrine disorders, anxiety, deconditioning, etc. Must rule these out. PMC+1

Pathophysiology / Subtypes

POTS is not one single disease; rather, a syndrome with multiple contributing mechanisms. Some of the recognized contributing factors include:

• Hypovolemia (low blood volume) or impaired volume regulation. Johns Hopkins Medicine+2PMC+2

• Peripheral venous pooling (blood accumulating in legs and lower body when upright) due to poor vasoconstriction. Johns Hopkins Medicine+2American College of Cardiology+2

• Hyperadrenergic phenotype: excessive sympathetic nervous system activation (higher levels of norepinephrine / epinephrine) when upright. PMC+1

• Autonomic neuropathy / small fiber neuropathy in some patients. PMC+1

• Deconditioning: physical inactivity leads to worsening of orthostatic intolerance, and in some cases contributes to the onset of POTS. American College of Cardiology+1

Treatment

There is currently no cure that works universally, but POTS is very treatable. The goals are to relieve symptoms, improve quality of life, improve tolerance of standing and activity, and prevent complications. Treatment is often multi-modal.

Non-Pharmacological Interventions (first-line)

• Increase fluids (often up to ~4 liters/day) and increase dietary salt (often liberalization, unless contraindicated) to increase blood volume. PMC+1

• Compression garments (waist-high, abdominal binders) to reduce venous pooling. PMC+1

• Drinking drinks with electrolytes

• Physical reconditioning / graded exercise programs: start with low-impact or recumbent/aquatic exercise, gradually increasing duration and intensity. Johns Hopkins Medicine+1

• Behavioral adjustments: avoid prolonged standing, heat exposure; small, frequent meals; elevating head of bed; slow posture changes; leg crossing, use of counter-maneuvers. American College of Cardiology+1

Pharmacological Treatment

When non-drug measures are insufficient, medications may be added, often in a tailored, stepwise fashion:

• Beta-blockers (e.g. propranolol) for patients with very high upright HR, to reduce tachycardia. PMC+1

• Ivabradine (in some cases, especially if beta-blockers are contraindicated) to lower heart rate. PMC

• Midodrine (an α-agonist) to improve vascular tone and reduce blood pooling. PMC+1

• Fludrocortisone to help retain sodium and water, increase blood volume. Johns Hopkins Medicine+1

• Other agents (depending on subtype or associated conditions) — for example, agents targeting hyperadrenergic state, or therapies for gastrointestinal, neurological symptoms if present. USC Journal+1

Multidisciplinary Care

Because POTS often overlaps with other conditions (e.g. hypermobility disorders, mast cell activation, small fiber neuropathy, mental health concerns), collaboration among cardiology, neurology, rehabilitation / physical therapy, psychology is beneficial. Patient education is crucial: helping patients understand what triggers symptoms, how to self-manage, set realistic goals. American College of Cardiology+1

Prognosis & What to Expect

• Many patients see improvement over time with appropriate treatment; the severity of symptoms may wax and wane. PMC+1

• Complete remission is possible in some, especially if diagnosis and interventions occur earlier. But others may have chronic symptoms. PMC+1

• Quality of life, daily functioning, and ability to do activities like school/work can improve with a comprehensive rehabilitation approach. The Dysautonomia Project+2PMC+2

Insights from The Dysautonomia Project

While The Dysautonomia Project is not a primary research report, it serves as an invaluable bridge between clinicians and patients. Some themes and insights:

• “The number one treatment in dysautonomias is education, importantly of the physician, which will then help them to educate their patient …” (from a review of The Dysautonomia Project) — emphasizing that many delays in diagnosis and suboptimal care stem from lack of awareness. bjgplife.com

• The book format includes side-by-side content: portions aimed at patients and portions aimed at medical professionals. This dual format helps patients understand medical reasoning, and helps physicians remain aware of patient experience. bjgplife.com

• It underscores how often POTS (and dysautonomia broadly) is misdiagnosed or underrecognized. bjgplife.com

Practical Steps for Patients / Clinicians

1. If you suspect POTS – keep a log of symptoms, especially how they relate to posture, time-of-day, triggers (heat, meals, standing).

2. Bring this to medical attention – ask for orthostatic vital signs, and possibly referral to an autonomic specialist or center.

3. Start lifestyle changes immediately – increase fluids and salt (as tolerated), avoid known triggers, use compression, begin gentle graded movement.

4. Medication only if needed, carefully matched to the individual’s symptom pattern and monitored for side effects.

5. Rehabilitation, including physical therapy and possibly psychological support, to regain activity, reduce deconditioning.

Summary

POTS is a complex but treatable autonomic disorder. Early diagnosis, patient education, individualized non-pharmacological interventions, and carefully selected pharmacologic therapy in the context of a multidisciplinary team can lead to significant improvements in symptoms and quality of life. Resources like The Dysautonomia Project help both patients and providers understand the breadth of POTS, its pitfalls, and evidence-based strategies for managing it.

This is only to educate not meant to treat or diagnose. Im not a medical professional, rather a person living with pots and wanted to share with you some educational information I have found while doing my own research.

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The Original "Girl In A Bubble"