Living with POTS and Ehlers-Danlos Syndrome: A Guide to Understanding, and Managing

Imagine standing up and feeling like you've just sprinted a marathon—your heart is pounding, your vision blurs, and your legs feel like jelly. For millions worldwide, this isn't just an occasional dizzy spell but a daily battle caused by Postural Orthostatic Tachycardia Syndrome (POTS).

POTS is a complex condition that affects the autonomic nervous system, leading to dizziness, rapid heart rate, fatigue, and other symptoms when transitioning from lying down to standing. Interestingly, many people with POTS also have Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), suggesting a strong link between connective tissue disorders and autonomic dysfunction.

In this blog, we’ll break down:

✔ What POTS is and why it happens

✔ The symptoms and common triggers

✔ How POTS connects to EDS/HSD

✔ Treatment strategies to manage symptoms holistically

✔ Common misconceptions and recent research on POTS

1. What is POTS?

POTS is a form of dysautonomia (a dysfunction of the autonomic nervous system) that primarily affects blood circulation. The key feature of POTS is an abnormal increase in heart rate (by at least 30+ bpm in adults and 40+ bpm in adolescents) within 10 minutes of standing.

Instead of efficiently pumping blood upwards, the body struggles with blood pooling in the lower extremities, causing symptoms like dizziness, brain fog, and extreme fatigue.

2. Symptoms of POTS

POTS symptoms vary but often include:

• Cardiovascular Symptoms: Rapid heartbeat, palpitations, low blood pressure upon standing, dizziness, fainting.

• Neurological Symptoms: Brain fog, migraines, anxiety-like feelings.

• Gastrointestinal Issues: Nausea, bloating, slow digestion (gastroparesis), constipation.

• Chronic Fatigue & Exercise Intolerance: Feeling drained after minimal activity.

• Temperature Dysregulation: Excessive sweating or feeling unusually hot/cold.

Symptoms are often worse in the morning and triggered by heat, dehydration, standing too long, stress, and heavy meals.

3. How POTS Connects to EDS/HSD

Many people with Hypermobile EDS (hEDS) or HSD also develop POTS. Here’s why:

1. Weak Connective Tissue Affects Blood Vessels

EDS and HSD involve defective collagen, the protein that supports skin, joints, and blood vessel walls. Weak blood vessels make it harder to regulate blood pressure, leading to pooling in the legs.

2. Joint Instability Stresses the Nervous System

Hypermobility can lead to joint subluxations (partial dislocations) and chronic pain, activating the sympathetic nervous system (fight-or-flight mode), which can worsen POTS symptoms.

3. Mast Cell Activation Syndrome (MCAS) as a Common Factor

Many people with POTS & EDS/HSD also have MCAS, where mast cells release too many inflammatory chemicals like histamine. This can cause flushing, hives, GI issues, and heart rate spikes—making POTS even worse.

4. Blood Volume & Salt Retention Issues

People with POTS & EDS/HSD often have low blood volume and difficulty retaining salt, making them prone to dehydration and low blood pressure.

4. Managing POTS: A Holistic Approach

While there is no single cure for POTS, a combination of lifestyle changes, medications, and supportive therapies can significantly reduce symptoms.

1. Increasing Blood Volume & Circulation

✔ Salt & Fluids: Aim for 2-3 liters of fluids daily with salt and electrolytes (unless contraindicated) to help blood volume.

✔ Compression Garments: Waist-high compression socks help prevent blood pooling.

✔ Leg Exercises: Calf pumps before standing can improve circulation.

2. Medications for Symptom Control

🔹 Beta-Blockers (Propranolol, Metoprolol): Help regulate heart rate.

🔹 Fludrocortisone: Aids in retaining fluids and increasing blood volume.

🔹 Midodrine: Helps constrict blood vessels to prevent blood pooling.

🔹 IV Fluids: Can provide relief during flare-ups.

3. Nutrition & Supplements

✔ Electrolytes: Coconut water, electrolyte powders, or homemade electrolyte drinks.

✔ Magnesium & B Vitamins: Support nervous system function.

✔ CoQ10 & L-Carnitine: Help with energy production.

4. Gentle Movement, & Nervous System Support

Chronic stress keeps the body in "fight-or-flight" mode, which can trigger POTS. Activating the parasympathetic nervous system (rest-and-digest mode) may help reduce symptoms:

Since POTS is worsened by a dysregulated nervous system ("fight-or-flight" mode), supporting the parasympathetic (rest-and-digest) system is key:

• Recumbent & Gentle Movement:  Start with seated or lying-down activities. Practices like EDS Movement therapy, deep-breathing, moving meditation and exercises customized to EDS body needs can reduce stress and enhance symptoms. Check our ParaMotion Youtube Channel for movement recommendation or book a consultation with us so that you can get personalized help catered to your body needs.

• Adequate Rest: Ensuring sufficient sleep aids in overall recovery and symptom management. Taking time off and breaks is also essential to reduce tension and stress on our bodies.

• Lymphatic Massage: May improve circulation and symptoms.

5. Misconceptions About POTS

"POTS is Just Anxiety"

Many patients are told their symptoms are "just anxiety" because POTS causes a racing heart, dizziness, and even panic-like sensations. However, POTS is a disorder of the autonomic nervous system, not a mental health condition.

"Just Drink More Water and Eat Salt"

While increasing salt and fluids is essential, proper electrolyte balance and glucose intake are also necessary. Overhydration without balanced electrolytes can make symptoms worse.

"POTS is Rare"

Many doctors still believe POTS is rare, but research suggests it's underdiagnosed rather than uncommon, with 1-3 million people in the U.S. alone affected.

"You Just Need to Exercise More"

While movement is crucial, traditional exercise can worsen symptoms if not approached carefully. Overexertion can trigger post-exertional malaise, making recovery harder.

Final Thoughts

POTS is a challenging but manageable condition. With proper hydration, nutrition, gentle movement, and nervous system regulation, many people see significant improvements. Seeking a specialist in dysautonomia and connective tissue disorders can be life-changing.

🌿 Healing takes time—small, consistent changes can make a big difference!

Ready to take the next step? 👉 [Book your Free 15 minutes call here!!]