Headaches in hEDS and HSD: What the Research Tells Us

Quick Answer

Are headaches more common in people with hEDS or HSD?

Yes. Research consistently shows that headaches — including migraine, cervicogenic headache, and daily persistent headache — are significantly more prevalent in people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) than in the general population. A 2024 review (Mehta et al., PMC11581963) highlights several potential mechanisms, including craniocervical instability, intracranial pressure dysregulation, central sensitisation, and autonomic dysfunction.

Headache is one of the most commonly reported symptoms in the hEDS and HSD community, yet it is also one of the least systematically addressed in clinical practice. Most people with hEDS-related headaches will have seen multiple practitioners — general practitioners, neurologists, physiotherapists — without a clear explanation of why the headaches occur or how they relate to their connective tissue condition. The research is now providing clearer answers.

Mehta et al. (2024) — PMC11581963, PubMed Central

A comprehensive review of headache presentations in EDS and hypermobility spectrum disorders, examining prevalence data, proposed mechanisms (craniocervical instability, CSF pressure dysregulation, mast cell activation, central sensitisation), and implications for clinical management. The review advocates for a multidisciplinary approach and highlights the current gap between research and clinical practice in this population.

Prevalence: How Common Are Headaches in hEDS?

Studies included in the 2024 review report headache prevalence in hEDS cohorts ranging from 40–70%, compared to 12–15% in general population estimates for chronic or frequent headache. Migraine affects approximately 25–30% of people with hEDS, a rate substantially higher than the general population figure of around 12–15%. Daily persistent headache — headache occurring fifteen or more days per month — is also disproportionately represented.

40–70%

Prevalence of recurrent headaches reported in hEDS cohort studies — compared to ~15% in the general population

Mechanisms: Why Does hEDS Cause Headaches?

The review identifies several overlapping mechanisms:

• Craniocervical instability (CCI): laxity in the ligaments supporting the craniocervical junction (occiput–C1–C2) may allow excessive movement that irritates the surrounding neural and vascular structures. The C1–C3 nerve roots, which share a nociceptive nucleus with the trigeminal nerve, are particularly relevant to headache generation.
• Intracranial pressure dysregulation: some people with hEDS have evidence of intracranial hypertension (raised CSF pressure) or CSF hypotension (leaks), both of which produce characteristic headache patterns. Postural headache (worse on standing, relieved by lying) should prompt consideration of CSF leak in this population.
• Central sensitisation: widespread nervous system sensitisation — common in hEDS and HSD — amplifies pain from all sources, including headache triggers that might be sub-threshold in someone without sensitisation.
• Dysautonomia: POTS and other autonomic dysfunction produce orthostatic headache through reduced cerebral perfusion on standing.
• Mast cell activation syndrome (MCAS): increasingly recognised as a comorbidity in hEDS, MCAS can contribute to headache through inflammatory mediator release.

A headache in someone with hEDS is not "just a headache." The underlying mechanism may be cervical, intracranial, autonomic, or sensitisation-driven — and each requires a different management approach.

Clinical Implications for Velca Practitioners

The review underscores that effective headache management in hEDS requires a multidisciplinary approach. At Velca Allied Health, this may involve:

• Cervical assessment and treatment for cervicogenic headache — with careful technique selection given craniocervical instability risk
• Autonomic assessment (MAPS screening, NASA Lean Test) for orthostatic headache
• Pain neuroscience education for central sensitisation-driven headache
• Referral for CSF pressure investigation where the headache pattern is positional
• Coordination with GP or neurologist for migraine management

Frequently Asked Questions

Should cervical manipulation be used for headaches in hEDS?

Caution is warranted with high-velocity cervical manipulation in people with hEDS and suspected craniocervical instability. Lower-velocity mobilisation techniques and stabilisation-focused physiotherapy are generally preferred for upper cervical work in this population. Your practitioner at Velca will select techniques appropriate for your specific presentation.

What is a positional headache and why is it relevant in hEDS?

A positional headache is one that is significantly worse on standing and relieved by lying down (CSF hypotension/leak), or consistently worse on bending forward or lying down (intracranial hypertension). Positional patterns in a person with hEDS should prompt specialist referral for CSF pressure investigation.

Can improving POTS management reduce headaches in hEDS?

For people whose headaches have a clear orthostatic pattern — worse on standing, better on lying — addressing POTS through increased fluids, compression, and autonomic rehabilitation may reduce headache frequency. The overlap between POTS symptoms and headache in hEDS makes autonomic assessment a worthwhile part of headache management in this population.

Does Velca treat headaches in people with hEDS?

Yes. Given the complexity of headache in hEDS, Velca takes a thorough approach — including clinical assessment of the cervical spine, autonomic screening, and consideration of all the mechanisms outlined above. Our team also coordinates with GPs and specialists where further investigation is needed.

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This article is intended for general information purposes only and does not constitute medical advice. Please consult a qualified health professional for assessment, diagnosis, and treatment tailored to your individual circumstances. Velca Allied Health, 10 Wellington Street, Howick, Auckland 2014.