Dysautonomia

Overview

Dysautonomia describes disorders of the autonomic nervous system (the body’s automatic control of heart rate, blood pressure, temperature, digestion and bladder). It can be primary (e.g., POTS, neurally mediated syncope) or secondary to other conditions (e.g., diabetes, autoimmune disease, hEDS/EDS, post-viral syndromes).
Symptoms often fluctuate and may worsen on standing, heat exposure or after exertion.

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Common Symptoms

• Orthostatic intolerance: light-headedness, fainting/near-fainting, “brain fog”
• Heart & circulation: palpitations, rapid heartbeat on standing, chest discomfort
• Fatigue & exercise intolerance; post-exertional symptom flare
• Temperature & sweating: heat/cold intolerance, too much/too little sweating
• Gastrointestinal: bloating, nausea, constipation/diarrhoea, early fullness
• Bladder & pelvic: urgency, frequency, incontinence
• Headache, migraine, shakiness, visual blurring on standing

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When to seek urgent help

Call 999/A&E for:

• Chest pain with breathlessness, fainting with injury, or prolonged loss of consciousness
• New focal neurological symptoms (weakness, speech or vision change)

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Causes & Risk Factors

• Primary forms: Postural Orthostatic Tachycardia Syndrome (POTS), neurally mediated syncope, orthostatic hypotension
• Secondary forms: diabetes/neuropathy, autoimmune disease, post-viral/Long COVID, Parkinson’s, MS, amyloidosis, chemotherapy effects, small fibre neuropathy
• Associated: hypermobile EDS (hEDS), deconditioning, anaemia/low iron, thyroid disorders, some medications

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Diagnosis

Your clinician may consider:

• History & examination including lying/standing vitals
• Active stand or tilt-table testing (heart rate/BP response)
• ECG, ambulatory monitoring where needed
• Blood tests (e.g., full blood count, ferritin/iron, thyroid, B12/folate, autoimmune screen)
• Autonomic/sudomotor testing (specialist), possible skin biopsy for small fibre neuropathy in selected cases

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Treatment & Management

Plans are individual and may include:

• Non-pharmacological: increased fluids; salt (if medically appropriate); compression garments; small frequent meals; sleeping with head-end raised; graded recumbent exercise progressing to upright; pacing and flare-planning; heat avoidance/cooling strategies; sleep optimisation
• Medicines (specialist-guided): low-dose beta-blocker or ivabradine (tachycardia control), midodrine or fludrocortisone (BP support), pyridostigmine; agents for GI/bladder symptoms; treat underlying causes. (Use only on clinician advice.)

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Rehabilitation at The Royal Buckinghamshire Hospital

We provide multidisciplinary rehabilitation to help you manage symptoms and improve daily function.

What we focus on

• Physiotherapy: autonomic-informed conditioning, graded strength/endurance, gait/balance, breathing control
• Occupational Therapy: activity pacing, energy conservation, return-to-work/education plans, environmental adaptations
• Autonomic strategies: hydration/salt planning (as advised), compression, positional techniques, heat management
• Vestibular & dizziness therapy where indicated
• Psychology/Neuropsychology: coping skills, anxiety/low-mood strategies, sleep and flare management
• Education: self-management toolkit and relapse-prevention plan