Dysautonomia in hEDS

Introduction

Dysautonomia — a malfunction of the autonomic nervous system (ANS) that controls blood-pressure, heart-rate, temperature and digestion — is remarkably common in hypermobile Ehlers-Danlos Syndrome (hEDS). Cohort studies suggest that 30 – 40 % of people with hEDS develop an orthostatic intolerance disorder such as Postural Orthostatic Tachycardia Syndrome (POTS) or Orthostatic Hypotension (OH), contributing to fatigue, dizziness and “brain-fog”. PMC

Connective-tissue laxity, small-fiber neuropathy and central sensitisation appear to play a synergistic role, leaving blood-vessels less able to constrict and the brain’s baroreflex circuits hypersensitive. A 2024 narrative review noted overlapping pain-processing pathways between hEDS, fibromyalgia and autonomic dysfunction, underlining the need for integrated care. PMC

Dr Stephanie Barrett brings together expertise in rheumatology, pain neuroscience and non-invasive neuromodulation (rTMS) to deliver personalised, evidence-based management for patients living with this often-debilitating combination.

What is Dysautonomia in hEDS?

In hEDS the collagen that supports blood-vessels and nerves is stretchier than normal. When you stand, gravity draws blood into lax veins; heart-rate accelerates to compensate, but blood-pressure may still fall, triggering a cascade of symptoms. Worsening Dysautonomia is well recognised following covid and other viral infections in hypermobile patients.

Common Dysautonomia sub-types

POTS – Palpitations, light-headedness, tremor within minutes of standing

Orthostatic Hypotension (OH) – Faintness, “greying-out” on standing

Orthostatic Intolerance (OI) – Mix of POTS/OH symptoms but criteria not fully met. Symptoms relieved by sitting/lying

Widespread autonomic dysfunction in hEDS can also affect gut motility (may cause gastroparesis), bladder control, thermoregulation, dry eyes and mouth, worsening Raynauds symptoms, sensitivity to external stimuli particularly bright lights . in particular this is linked to brain fog and fatigue.

Symptoms of Dysautonomia in hEDS

Cardiovascular – Rapid heart-rate, palpitations, chest discomfort, low BP

Neurological / Cognitive – Dizziness, brain-fog, headache, blurred vision, anxiety

Gastro-intestinal – Nausea, early satiety, bloating, constipation or diarrhoea

Genitourinary – Frequency, urgency, dysmotility-related urinary retention

Thermoregulatory / Skin – Excess sweating or cold extremities, colour changes, acrocyanosis

Musculoskeletal / Systemic – worsening of pain, tremor, shakiness, exercise intolerance, profound fatigue

Symptoms often worsen with heat, dehydration, prolonged standing, large meals or illness and ease when lying flat. See The Ehlers Danlos Society

Treatment for Dysautonomia in hEDS

1. Lifestyle & Self-Management Foundations

Hydration + salt loading (2–3 L fluids & 8–10 g sodium daily, particularly front load water and electrolytes ( e.g. zero, ORS tablets in water at the beginning of the day.
Graduated compression tights to the abdomen (Beister Compression Tights).
Trigger control – heat‐avoidance, cooling devices, wear natural fibres, eat smaller low-glycaemic meals.

These first-line measures are endorsed by the The Ehlers Danlos Society.

2. We work with specialist hypermobilty trained physiothepists for rehabilitation

3. Neuromodulation with rTMS

A 2023 meta-analysis found repetitive transcranial magnetic stimulation can enhance parasympathetic tone and lower sympathetic arousal, reflected in improved heart-rate variability across 19 studies ScienceDirect. Dr Barrett offers dorsolateral prefrontal cortex protocols originally developed for pain and fatigue, now customised to re-balance autonomic output in selected hEDS/POTS cases. In many cases we see significant improvements in dysautonomia after 20 sessions of right sided rTMS treatment.

4. Integrated Care for Comorbidities

Gastrointestinal dysmotility, mast-cell activation and chronic pain frequently co-exist. Dr Barrett co-ordinates gastroenterology, immunology and pain-medicine input to streamline appointments and avoid polypharmacy.

Ready to regain autonomic stability?

Persistent dizziness, tachycardia or gut-upset don’t have to dictate your day. At her Harley Street and Chelsea clinics, Dr Stephanie Barrett provides comprehensive assessment and state-of-the-art therapies — from precision hydration plans to cutting-edge rTMS — helping people with hEDS reclaim confidence and control. If you have widespread chronic pain and dysautonomic symptoms please book.