Have you ever stood up quickly and felt like the room was spinning? For most people, this dizzy spell lasts just a moment before the body adjusts. But for those with Postural Orthostatic Tachycardia Syndrome (POTS) and other forms of dysautonomia, this isn't a fleeting inconvenience—it's a life-altering reality that can disrupt every aspect of daily functioning.

As a functional medicine physician who has worked with numerous patients navigating the complex landscape of autonomic dysfunction, I've witnessed firsthand the frustration and isolation that comes with these often-misunderstood conditions. Today, I want to share comprehensive insights into the diagnosis and treatment of POTS and dysautonomia, drawing from both the latest research and my clinical experience.

Understanding POTS and Dysautonomia: Beyond Just Dizziness

Dysautonomia is a broad term describing dysfunction of the autonomic nervous system (ANS)—the part of our nervous system that controls involuntary bodily functions like heart rate, blood pressure, digestion, temperature regulation, and more. POTS is one specific form of dysautonomia characterized by an abnormal increase in heart rate upon standing, accompanied by symptoms of orthostatic intolerance.

What makes these conditions so challenging is their multi-system nature. When your autonomic nervous system malfunctions, it's not just your heart rate or blood pressure that's affected—it's virtually every automatic function in your body.

Common symptoms of POTS and dysautonomia include:

• Cardiovascular symptoms: Rapid heartbeat, palpitations, chest pain, low blood pressure
• Neurological symptoms: Brain fog, headaches, syncope (fainting), near-syncope, dizziness
• Gastrointestinal symptoms: Nausea, early satiety, bloating, constipation, diarrhea
• Temperature regulation issues: Heat intolerance, excessive or insufficient sweating
• Energy issues: Profound fatigue, post-exertional malaise, exercise intolerance
• Urinary symptoms: Frequent urination, urinary urgency or retention
• Visual disturbances: Blurred vision, difficulty focusing, light sensitivity
• Sleep disturbances: Insomnia, unrefreshing sleep, sleep-state misperception

The constellation and severity of symptoms vary widely between individuals, which is one reason why diagnosis can be so challenging.

The Diagnostic Journey: From Recognition to Confirmation

Getting an accurate diagnosis of POTS or dysautonomia often involves a journey that can feel frustratingly long. Many patients see multiple specialists before finding the right diagnosis, with an average diagnostic delay of about six years. Let's explore the key steps in this process:

Clinical Presentation and History

The foundation of diagnosis begins with a thorough clinical history. Several patterns may raise suspicion for POTS:

• Symptoms that worsen with upright posture and improve with recumbency
• Symptom exacerbation after prolonged standing, heat exposure, or large meals
• History of preceding viral illness, surgery, pregnancy, or trauma
• Symptoms that fluctuate but have persisted for at least 6 months
• Co-existing conditions like Ehlers-Danlos Syndrome, mast cell activation, or autoimmune disorders

Diagnostic Criteria for POTS

According to the consensus statement from leading experts, the diagnostic criteria for POTS include:

1. Heart rate increase: A sustained heart rate increase of ≥30 beats per minute (or ≥40 bpm in those aged 12-19) within 10 minutes of standing or head-up tilt
2. Chronicity: Symptoms lasting ≥6 months
3. Orthostatic symptoms: Symptoms that worsen with standing and improve with recumbency
4. Absence of other causes: Ruling out conditions that could cause orthostatic tachycardia, such as acute blood loss, medications, or adrenal insufficiency

Recommended Testing

Several tests can help confirm a POTS diagnosis and rule out other conditions:

1. Active Stand Test

This simple in-office test involves measuring heart rate and blood pressure while lying down, then again after standing. For a positive POTS diagnosis, there should be a heart rate increase of at least 30 bpm (or 40 bpm in adolescents) within 10 minutes of standing, without a significant drop in blood pressure.

2. Head-Up Tilt Table Test

This test provides a more controlled environment for assessing orthostatic tolerance. The patient is secured to a table that can be tilted to different angles while heart rate, blood pressure, and symptoms are monitored. This test can be particularly useful for distinguishing between different types of dysautonomia.

3. Holter Monitoring

A 24-48 hour Holter monitor can help identify heart rate patterns throughout daily activities and sleep, providing a more comprehensive picture of cardiovascular dysregulation.

4. Autonomic Function Testing

More specialized centers may offer comprehensive autonomic testing, including:

• Quantitative sudomotor axon reflex test (QSART)
• Thermoregulatory sweat test
• Valsalva maneuver
• Deep breathing heart rate variability
• Cold pressor test

5. Laboratory Testing

Important lab work may include:

• Complete blood count to rule out anemia
• Thyroid function tests to exclude hyperthyroidism
• Serum ferritin to assess iron status
• Catecholamines (in some cases)
• Autoimmune markers
• Vitamin B12 and folate levels

Identifying POTS Subtypes

Understanding the subtype of POTS is crucial for guiding treatment. The main recognized subtypes include:

Neuropathic POTS: Characterized by partial sympathetic denervation, particularly in the lower limbs, leading to blood pooling in the legs when standing. This type often shows reduced sweating in the feet on autonomic testing.

Hyperadrenergic POTS: Features excessive sympathetic nervous system activation with elevated norepinephrine levels (>600 pg/mL) when upright. Patients often experience prominent anxiety, tremor, and elevated blood pressure when upright.

Hypovolemic POTS: Involves reduced blood volume, which can be assessed through blood volume testing. These patients often respond well to volume expansion strategies.

Post-viral POTS: Develops following a viral illness, potentially due to immune-mediated mechanisms or direct viral damage to the autonomic nervous system.

Joint Hypermobility-Related POTS: Associated with Ehlers-Danlos Syndrome or joint hypermobility spectrum disorders, possibly due to venous pooling in overly compliant blood vessels or altered biomechanics affecting autonomic function.

Comprehensive Treatment Approaches for POTS and Dysautonomia

Managing POTS and dysautonomia effectively typically requires a multi-faceted approach tailored to each patient's specific subtype and symptoms. Let's explore the various treatment options:

Non-Pharmacological Approaches

1. Hydration and Electrolytes

Adequate hydration is foundational for POTS management, with many patients benefiting from 2-3 liters of fluid daily alongside increased sodium intake (aiming for 8-10g daily unless contraindicated). Electrolyte solutions can be particularly helpful.

2. Compression Garments

Waist-high compression stockings (30-40 mmHg) and abdominal binders can help reduce venous pooling and improve orthostatic tolerance. These are most effective when properly fitted and covering the full length of the legs and abdomen.

3. Exercise Recumbency Training

A carefully structured, gradually progressive exercise program beginning with recumbent exercises (swimming, recumbent biking, rowing) can help recondition the autonomic nervous system. The CHOP Protocol is one structured approach that has shown good results.

4. Positional Adaptations

Simple measures like elevating the head of the bed 4-6 inches, avoiding prolonged standing, using counter-pressure maneuvers, and changing positions slowly can significantly reduce symptoms.

5. Dietary Modifications

Small, frequent meals low in simple carbohydrates may reduce post-prandial symptoms. Some patients benefit from limiting alcohol, caffeine, and high-histamine foods, particularly those with comorbid mast cell activation.

Nutrition is the foundation for health. Click here to download my free guide with top tips I personally use and focus on to stay on top of healthy eating!

Pharmacological Interventions

When non-pharmacological approaches aren't sufficient, several medications may help manage symptoms:

1. Volume Expanders

• Fludrocortisone (Florinef): Helps retain sodium and increase blood volume
• Desmopressin (DDAVP): Reduces urine output and increases blood volume
• IV saline: For acute management or refractory cases

2. Heart Rate Control

• Beta-blockers (e.g., propranolol, metoprolol): Reduce heart rate and can improve exercise tolerance in some patients
• Ivabradine: Slows heart rate without affecting blood pressure, often better tolerated than beta-blockers

3. Vasoconstriction

• Midodrine: An alpha-1 agonist that increases peripheral vascular resistance
• Droxidopa: A synthetic precursor to norepinephrine, helpful for neurogenic orthostatic hypotension

4. Sympatholytic Agents

• Clonidine: Helpful for hyperadrenergic POTS with hypertensive episodes
• Methyldopa: Alternative for hyperadrenergic symptoms

5. Other Medications

• Pyridostigmine: Enhances parasympathetic tone and may improve symptoms
• Low-dose naltrexone: May help modulate autonomic function in some patients
• SSRIs/SNRIs: Can help manage anxiety and may improve orthostatic tolerance

Addressing Comorbid Conditions

Many POTS patients have overlapping conditions that need concurrent management:

Mast Cell Activation Syndrome: H1 and H2 antihistamines, mast cell stabilizers, and low-histamine diets may significantly improve POTS symptoms in those with mast cell activation.

Ehlers-Danlos Syndrome: Physical therapy, joint stabilization, and pain management are crucial for EDS patients with POTS.

Small Fiber Neuropathy: Present in many POTS patients, this may require specific treatments including IVIg in some cases.

Autoimmune Disorders: Addressing underlying autoimmunity through immunomodulation can help in autoimmune-mediated POTS.

Emerging Treatments for Refractory POTS

For patients who don't respond to conventional therapies, several innovative approaches show promise:

Immunomodulatory Therapies: Intravenous immunoglobulin (IVIg), particularly in post-viral or autoimmune-suspected POTS, has shown benefit in several studies and case reports.

Vagus Nerve Stimulation: Both invasive and non-invasive vagal stimulation techniques may help rebalance autonomic function.

Stellate Ganglion Block: This procedure can help reset sympathetic tone and has shown promise in refractory cases.

Transcranial Direct Current Stimulation: Early research suggests this may help modulate autonomic centers in the brain.

A Functional Medicine Approach to POTS Recovery

Beyond conventional treatments, my functional medicine approach to POTS focuses on addressing root causes and optimizing overall function:

1. Mitochondrial Support

Since energy production is often compromised in POTS, supporting mitochondrial function is crucial:

• CoQ10 (100-300mg daily)
• L-carnitine (1000-2000mg daily)
• B vitamins, particularly riboflavin and thiamine
• Alpha-lipoic acid and PQQ

2. Nervous System Regulation

Tools to help calm an overactive sympathetic nervous system:

• Vagal nerve exercises and breathing techniques
• Meditation and mindfulness practices
• Heart rate variability biofeedback
• Adaptogenic herbs like ashwagandha

3. Immune Modulation

For post-viral or autoimmune-related POTS:

• Low-dose naltrexone
• Anti-inflammatory diet
• Targeted supplements like curcumin and resveratrol
• Addressing chronic infections

4. Gut-Brain Axis Support

Given the common overlap with gastrointestinal symptoms:

• Comprehensive digestive support
• Gut microbiome optimization
• Targeted probiotics for autonomic support
• Addressing SIBO or dysbiosis

Supporting POTS Recovery with Targeted Supplementation

Based on my clinical experience with POTS patients, I've developed specialized formulations that can provide support during the recovery journey:

Adrenal Essentials

My Adrenal Essentials formula combines adaptogenic herbs, activated B vitamins, vitamin C, and targeted minerals to support healthy stress response and adrenal function. This can be particularly helpful for POTS patients dealing with fatigue and stress intolerance.

The formula includes:

• High-potency pantothenic acid and vitamin C
• Activated B vitamins
• Mineral amino acid chelates
• Adaptogenic herbs that help balance the stress response

Activated B Complex

Many POTS patients have genetic variations affecting B vitamin metabolism or increased B vitamin requirements due to heightened stress responses. My Activated B Complex provides the bioactive forms of B vitamins, including methylfolate and methylcobalamin, supporting energy production, neurotransmitter synthesis, and cardiovascular function.

This comprehensive formula:

• Bypasses genetic variations affecting B vitamin activation
• Supports energy production at the cellular level
• Promotes healthy nervous system function
• Supports methylation processes essential for detoxification

Partnering with Specialists

While a functional medicine approach can provide significant benefits, collaboration with specialists experienced in dysautonomia is often crucial. Cardiologists specializing in electrophysiology or autonomic disorders, neurologists with autonomic expertise, and specialized POTS treatment centers can be invaluable resources.

The work of specialists like Dr. Sanjay Gupta, who has developed innovative protocols combining pharmacological and lifestyle interventions for refractory POTS, demonstrates the importance of specialized care for complex cases. His approach of carefully layering treatments to address multiple aspects of autonomic dysfunction has helped many patients previously considered treatment-resistant.

The Road to Recovery: A Message of Hope

Living with POTS or dysautonomia can be incredibly challenging, but I want to emphasize that improvement is possible. While some patients may experience full remission, others learn to effectively manage their condition and regain quality of life. The key is finding the right combination of treatments tailored to your specific presentation, addressing underlying factors, and working with knowledgeable healthcare providers.

Remember that healing is rarely linear—there will be good days and difficult days along the way. Be patient with yourself, celebrate small victories, and keep advocating for your needs. With the right support, understanding, and treatment approach, many POTS patients find their way back to a fulfilling life, even if it looks different than before.

References

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