The Headache Vault Research Series

U.S. Census ACS 2023 · Burch et al. (2021)

Where are the patients? A national headache disorder population estimate.

We estimate approximately 40.2 million Americans live with migraine — and 10.9 million meet criteria for preventive therapy. For the first time, that estimate is available at the ZIP code level, for all 33,772 ZCTAs, as open data.

Doty A. · July 2026 · Census ACS 2023 + Burch et al. (2021)

Download datasetRead the preprint →✓ CC BY 4.0
40.2M
Americans estimated to live with migraine
10.9M
estimated to meet criteria for preventive therapy
33,772
ZIP code tabulation areas in this dataset
1 in 7
Americans — more than diabetes and asthma combined

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Headache disorder population by congressional district

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The gap in headache workforce planning

The field knows the shortage is severe. It doesn't have the tools to measure it precisely.

Fewer than 900 UCNS-certified headache specialists serve an estimated 40 million Americans with migraine. That ratio — roughly 1 specialist per 45,000 patients nationally — is cited often. What the field has not produced is the geographic precision needed to act on it: how many patients are in each ZIP code, at what level of clinical complexity, and how far they are from care at the appropriate level.

This dataset provides the patient-side denominator for that calculation. It is the first publicly available ZCTA-level headache disorder prevalence file calibrated to Burch et al. (2021) migraine-specific prevalence rates — not all-headache rates — applied to the full universe of 33,772 ZCTAs. It is provided as open data under CC BY 4.0 for use by researchers, workforce planners, policymakers, and advocates.

A fuller analysis — integrating this population data with provider supply and payer policy data — is planned for later in 2026.

A proposed framework

Matching patients to care. A starting point for discussion.

Population data tells you how many patients there are. It does not tell you what level of care they need. Headache medicine lacks the patient complexity stratification framework that other neurological subspecialties — epilepsy, in particular — have developed to match patients to the appropriate provider level. We are proposing one. It is explicitly a starting point, not a validated instrument.

These complexity levels are proposed for clinical and policy discussion. The criteria are illustrative. We invite input from clinicians, workforce researchers, and policymakers. Send responses to alex@headachevault.com

1

Level 1Specialist center required

Highly refractory; rare diagnoses (NDPH, hemicrania continua); surgical candidacy; inpatient-level needs

UCNS-certified headache center

Criteria: Chronic migraine (≥15 MHD) with ≥3 preventive failures including ≥1 CGRP therapy; or diagnostically uncertain; or inpatient need

2

Level 2Specialist management indicated

Chronic or high-frequency episodic migraine with multiple treatment failures; significant functional disability

UCNS-certified specialist or formal headache program

Criteria: Chronic migraine with ≥2 preventive failures; or ≥8 MHD with MIDAS Grade III–IV and ≥1 CGRP failure

3

Level 3Neurology-level care indicated

Episodic migraine with comorbidities; early chronic; needs preventive initiation; diagnostic clarification needed

Neurology with headache focus; telehealth specialist oversight appropriate

Criteria: 8–14 MHD with disability and ≥1 inadequate preventive trial; or new onset requiring clarification; or medication overuse headache

4

Level 4General neurology or advanced primary care

Episodic migraine with disability; needs treatment optimization; no prior preventive trial

General neurology or advanced headache prescriber in primary care

Criteria: 4–7 MHD with disability (or ≥8 MHD) without prior preventive trial

5

Level 5Primary care appropriate

Well-managed or low-frequency episodic migraine; no specialist referral needed

Primary care with headache-engaged prescribing

Criteria: < 8 MHD without significant disability; or well-controlled; or newly presenting

Indicative national population estimates

Levels 1–2 — Specialist center~400,000
Levels 3–4 — Neurology~3.6 million
Level 5 — Primary care~36.2 million

Based on Steiner et al. (2021) 90:9:1 international caseload distribution. U.S.-specific distribution unpublished. Treat as illustrative.

Methodology

How the population estimate was built.

Population base:

Census ACS 2023 Table B01001 — sex- and age-specific population data for all 33,772 ZCTAs in the United States.

Prevalence rates:

Burch et al. (2021) calibrated rates — 21% in women, 10.7% in men — with age-band distributions from Burch et al. (2015). Migraine-specific rates, not all-headache.

Preventive-eligible subpopulation:

Buse et al. (2020) AMPP coefficient of 0.273 — patients with moderate-to-high frequency episodic migraine (MFEM 8–14 MHD) and high-frequency episodic migraine with disability (HFEM), normalized within the episodic subpopulation.

Limitation: Prevalence rates are applied uniformly and do not adjust for variation by race, ethnicity, or socioeconomic status. An equity-adjusted analysis is planned.

Open Data

✓ CC BY 4.0

Download the dataset.

The ZCTA-level file is freely available under CC BY 4.0. Use, share, and adapt for any purpose with attribution.

headachevault_population_by_zcta_2026.csv

33,772 rows · Columns: zcta, lat, lon, state, pop_total, tier1_total_burden, complexity_level1_2_demand, complexity_level3_4_demand, complexity_level5_demand, mfem_hfem_demand

Download CSV✓ CC BY 4.0
Doty A. Headache Disorder Population Estimates by ZCTA. The Headache Vault; 2026. headachevault.com/research/population

Preprint

Read the full analysis.

The methodology, complexity framework, and population distribution analysis are published as a preprint. Not peer reviewed. Submitted for comment and clinical input.

Headache Disorder Population Estimates and a Proposed Patient Complexity Framework for Workforce Planning

Alex Doty · The Headache Vault · July 2026

Preprint — not peer reviewed
Read preprint →

Available July 27, 2026. DOI pending · Target: SSRN.

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