Living With POTS: Everything You Need to Know After a New Diagnosis

What Is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. It is a condition that affects the autonomic nervous system (ANS) — the part of your body that automatically controls functions you don’t consciously think about, like your heartbeat, breathing, digestion, temperature, and blood pressure.

When the ANS doesn’t work correctly, these automatic functions become unreliable. This is what causes the wide variety of symptoms people with POTS experience every day.

POTS is sometimes called dysautonomia, which is a broader term for any condition that disrupts the autonomic nervous system.

How the Autonomic Nervous System Works

Think of the ANS as your body’s autopilot. It manages:

• Heart rate and blood pressure
• Breathing rhythm
• Digestion
• Body temperature and sweating
• Hormone balance
• Bladder function

The ANS has two branches that work together:

• Sympathetic nervous system — your “fight or flight” response. It activates during stress or danger.
• Parasympathetic nervous system — your “rest and digest” response. It helps you recover, relax, and conserve energy.

In a healthy body, these two branches stay balanced. In POTS, that balance is disrupted — particularly when you move from lying down to standing up.

Who Gets POTS?

POTS can affect anyone, but it most commonly appears in:

• Teenagers and young adults between the ages of 15 and 50
• Women and people assigned female at birth — who are approximately five times more likely to be diagnosed than men

It can also occur in children and older adults, though less frequently. Researchers believe hormones, immune function, and genetics may all contribute to why POTS disproportionately affects women.

What Are the Symptoms of POTS?

POTS symptoms vary widely from person to person. Some people experience mild symptoms they can manage day-to-day, while others face severe symptoms that significantly limit daily life. Symptoms can also come and go over time.

Here is a complete overview of POTS symptoms by body system:

Heart and Circulation

• Rapid heartbeat when standing (tachycardia)
• Heart palpitations
• Chest pain or tightness
• Dizziness or light-headedness, especially when standing
• Difficulty standing for extended periods, particularly in warm weather

Brain and Nervous System

• Dizziness and pre-fainting feelings
• “Brain fog” — difficulty concentrating, remembering, or thinking clearly
• Headaches and migraines
• Tingling or numbness (sensory disturbances)

Digestive System

• Nausea
• Stomach pain and bloating
• Constipation or diarrhea
• Difficulty eating enough to stay nourished

Energy and Muscles

• Persistent, chronic fatigue
• Weakness that worsens after standing or physical activity
• Post-exertional malaise (feeling worse after exertion)

Temperature Regulation

• Feeling too hot or too cold
• Fluctuating body temperature
• Inability to tolerate heat

Bladder

• Frequent or urgent need to urinate
• Difficulty fully emptying the bladder

Vision

• Blurry vision
• Difficulty focusing
• Sensitivity to bright lights

Sweating

• Excessive sweating unrelated to activity
• Difficulty sweating when the body needs to cool down

Important: Not everyone with POTS experiences all of these symptoms. If you recognize several of these, speak with your doctor about POTS testing.

What Causes POTS?

The exact cause of POTS is not always clear, and it can differ between individuals. Research suggests POTS often develops after a triggering event:

Infections and Viral Illness

POTS frequently develops after an infection — most notably COVID-19 (Long COVID) and glandular fever (Epstein-Barr virus). The immune system’s response to infection is believed to trigger changes in the autonomic nervous system.

Surgery or Physical Trauma

Major surgery or traumatic injuries, including concussions, can disrupt communication between the brain and the ANS, triggering POTS onset.

Hormonal Changes

Significant hormonal shifts during puberty, pregnancy, or menopause can affect blood volume, circulation, and ANS function — sometimes triggering POTS for the first time.

Connective Tissue Disorders

People with hypermobile Ehlers-Danlos Syndrome (hEDS) have a significantly higher risk of developing POTS due to the way connective tissue affects vascular support and blood flow.

How Is POTS Diagnosed?

There is no single blood test for POTS. Diagnosis is based on your symptoms, medical history, and specific heart rate and blood pressure measurements.

Diagnostic Criteria for POTS

A POTS diagnosis is typically confirmed when ALL of the following are true:

1. Heart rate increases by 30 beats per minute (bpm) or more within 10 minutes of standing (or exceeds 120 bpm)
2. Blood pressure does not drop significantly upon standing
3. Symptoms like dizziness, fainting, or light-headedness improve when lying down
4. Symptoms have been present for at least three months
5. No other condition fully explains the symptoms

The Active Stand Test

Also called the NASA Lean Test or the “poor man’s tilt,” this is the most accessible diagnostic test for POTS. Your heart rate and blood pressure are measured while lying flat, then again after standing. A rise of 30 bpm or more, combined with symptoms, may indicate POTS.

The Tilt Table Test

If the active stand test is inconclusive, your doctor may order a tilt table test. You lie on a motorized table that slowly tilts you to an upright position while your heart rate and blood pressure are monitored continuously. This test provides detailed data but is not required for a POTS diagnosis.

Additional Tests

Your doctor may also recommend:

• Holter Monitor — a portable device worn for 24–48 hours to record heart rhythm patterns throughout daily activity
• Echocardiogram — an ultrasound of the heart to rule out structural heart conditions

These tests help rule out other causes of symptoms but are not required to diagnose POTS.

How Is POTS Treated and Managed?

There is currently no cure for POTS. However, many people significantly improve their quality of life through a combination of lifestyle adjustments, physical strategies, and medical care.

1. Lifestyle Changes (First Line of Treatment)

Lifestyle changes are often the most impactful part of managing POTS:

• Avoid common triggers: Heat, prolonged standing, alcohol, and caffeine can worsen symptoms
• Keep consistent routines: Regular sleep schedules and meal times help stabilize the ANS
• Rest strategically: Balance activity with rest to avoid overexertion

2. Increase Fluid and Salt Intake

Increasing blood volume is one of the most effective ways to reduce POTS symptoms.

• Fluid target: 2–3 litres of water per day
• Salt target: Up to 10 grams per day (approximately 4,000 mg sodium / 2 heaped teaspoons), under medical supervision
• Electrolyte drinks can be especially helpful for rapid absorption

Always discuss salt and fluid targets with your doctor before making significant changes, especially if you have kidney, heart, or blood pressure conditions.

3. Compression Wear

Compression garments reduce blood pooling in the legs and lower abdomen, which helps blood return to the heart more efficiently.

• Look for compression rated at 20 mmHg or higher
• Ankle-to-waist coverage provides the most benefit
• Many modern brands offer comfortable, everyday compression wear — not just traditional medical stockings
• Any compression is generally better than none

4. Movement and Exercise

Exercise is one of the most evidence-supported treatments for POTS — but it must be approached carefully and progressively.

Why exercise helps: When your leg muscles contract, they push blood back up toward your heart. Stronger muscles mean better circulation and fewer symptoms.

How to start safely:

• Begin with recumbent or seated exercises (lying down or seated cycling, resistance bands, gentle stretching)
• Gradually progress as your body adapts
• Use a heart rate monitor to avoid overexertion
• Work with a physiotherapist or exercise physiologist who understands POTS or chronic illness

Goal: Build sustainable strength and endurance at a pace that supports — rather than disrupts — your daily life.

5. Medications

There are several medications that doctors may prescribe to help manage POTS symptoms, including those that affect heart rate, blood pressure, or blood volume.

Do not self-medicate. POTS medication needs to be carefully matched to your specific symptom profile. The wrong medication can make symptoms significantly worse. Always consult a doctor who specializes in POTS or dysautonomia.

6. Complementary Approaches

Some people find that certain mind-body techniques help support overall wellbeing when living with a chronic condition. These are not treatments for POTS, but they may complement your care plan:

• Deep breathing exercises — may gently stimulate the vagus nerve, which regulates heart rate and digestion
• Humming or singing — another form of vagal stimulation
• Mindfulness and relaxation techniques — may reduce sympathetic nervous system overactivation

Always check with your healthcare team before starting any new practice.

What Is the Long-Term Outlook for POTS?

POTS is often a chronic and fluctuating condition — meaning symptoms may improve, worsen, or change over time. Research into long-term outcomes is still growing.

The encouraging reality is that many people with POTS do improve, particularly with the right combination of management strategies. Many are able to:

• Return to work or study
• Maintain relationships and build families
• Participate in activities they enjoy

Recovery is rarely linear, and everyone’s journey is different. But with appropriate support, a better quality of life is achievable — and you are not alone in this.

POTS at School and Work

POTS can make it difficult to attend school or work consistently. Fatigue, brain fog, dizziness, and pain are among the most common barriers.

For Students

Work with your school, TAFE, or university to develop flexible arrangements, which may include:

• Modified or part-time timetables
• Regular rest breaks during the school day
• Exam accommodations (extra time, seated testing, private room)
• An Individual Learning Plan (ILP) tailored to your needs

For Working Adults

Speak with your employer about reasonable workplace adjustments, which might include:

• Remote work or flexible hours
• Access to a climate-controlled environment
• The ability to stay hydrated throughout the day
• Scheduled rest breaks
• Ergonomic seating or the ability to alternate sitting and lying

You have a right to discuss these needs with your employer, and in many countries there are workplace laws that support people with chronic health conditions.

Frequently Asked Questions About POTS

Q: Can POTS go away on its own?

Some people — particularly younger patients diagnosed after a triggering illness — do experience significant improvement or full remission over time. Others manage POTS as a long-term chronic condition. There is no way to predict individual outcomes.

Q: Is POTS a heart condition?

POTS involves abnormal heart rate responses, but it is fundamentally a disorder of the autonomic nervous system — not a structural heart problem. Echocardiograms in POTS patients are usually normal.

Q: Can I exercise if I have POTS?

Yes, and it’s actually recommended — but the type, intensity, and progression of exercise matters enormously. Start with recumbent or seated exercises and increase gradually with guidance from a POTS-informed healthcare provider.

Q: Is POTS the same as anxiety?

No. POTS and anxiety share some similar symptoms (rapid heartbeat, dizziness, fatigue), which can cause misdiagnosis. POTS is a physiological condition that can be confirmed through objective heart rate measurements during a stand test.

Q: What is the difference between POTS and dysautonomia?

Dysautonomia is the broad term for any dysfunction of the autonomic nervous system. POTS is one specific type of dysautonomia, characterized by the heart rate increase upon standing.

Q: How long does it take to be diagnosed with POTS?

Unfortunately, many people wait years for a correct diagnosis due to the wide variety of symptoms and limited awareness among general practitioners. If you suspect POTS, asking for an active stand test is a good starting point.

You Are Not Alone

A POTS diagnosis can feel overwhelming — especially when symptoms are invisible to others and misunderstood by many. But awareness is growing, communities are forming, and research is advancing.

At POTS.net, our mission is to make sure that anyone searching for answers about POTS — whether you were just diagnosed, supporting a loved one, or seeking better management strategies — finds clear, trustworthy, and compassionate information.

Reach out. Connect. Ask questions. Your experience is valid, and support is available.

Information on this page is for general educational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional for diagnosis and treatment.