What are Headache Disorders?
More Than “Just a Headache”
Headache disorders are a spectrum of over 200 different diagnoses. They affect people of all ages, genders, and backgrounds, often disrupting daily life in profound ways.
While some headache disorders occur occasionally, others are near constant, unrelenting, and resistant to treatment. Headache disorders are spectrum disorders. The intensity, location, and triggers of these conditions vary widely among individuals and can fluctuate during different life stages. However, what remains the same is that all headache disorders deserve recognition, research, and proper access to necessary care.
Examples of Some Types of Headache Disorders
Primary Headache Disorders
Primary headache disorders are headaches that are not caused by another illness or medical condition—they are the condition itself.
Trigeminal Autonomic Cephalgias (TACs)
The trigeminal autonomic cephalalgias are a group of primary headache disorders characterized by unilateral head pain around the eye or temple that is often accompanied by symptoms such as eye redness, tearing, nasal congestion, or restlessness.
Other Primary Headache Disorders
Secondary Headache Disorders
Secondary headache disorders are headaches caused by another medical condition, like an infection, head injury, or high blood pressure.
Facial Pain
Facial pain refers to pain experienced in any part of the face, including the eyes and mouth. This type of pain can vary in intensity and character, ranging from sharp or dull to throbbing or achy. It can also be acute or chronic and caused by either nociceptive or neuropathic factors. In some cases, facial pain can be a long-term condition. There are 35 defined conditions, listed below are just a few of the most common.
The Burden of Headache Disorders
Despite being among the most common neurological diseases, migraine and headache disorders remain one of the most underfunded and poorly understood areas of medicine. The lack of specialist care, restrictive insurance policies, and the overwhelming economic burden on patients and the healthcare system create serious barriers to treatment.
Access to Care Barriers
Shortage of Headache Specialists
Fewer than 900 UCNS-certified headache specialists practice in the United States—one for every 50,000 migraine patients (source: United Council for Neurologic Subspecialties). The shortage is especially severe in rural areas, where many patients must travel hours for specialist care or rely on emergency departments for crisis management.
Lack of Research Funding
Despite the drastic impact of headache disorders, the NIH provided only $104 million in funding for migraine and headache disorders in 2023, roughly 0.2% of its total budget – less than $3 per person living with migraine, or around 30 cents for every person living in the USA, nearly all of whom have seen the impact of migraine. Greater investment in headache disorder research is critical to advancing new non-opioid treatments, improving patient care, and understanding the complex mechanisms of these disorders.
Insurance Barriers: Step Therapy
Step Therapy (Fail First Policies): Many insurance plans deny coverage for newer, more effective migraine and headache disorder treatments until patients “fail” on older, often less effective medications. This can lead to uncontrolled symptoms, increased ED visits, unnecessary suffering, and higher healthcare costs. These extra, prolonged steps can cause patients with episodic migraine to progress to chronic migraine, increasing disability, and decreasing quality of life. Click the column to learn more.
Insurance Barriers: Co-Pay Accumulators
Some insurers block manufacturer co-pay assistance from counting toward a patient’s deductible, making life-changing treatments financially out of reach for many patients with headache disorders.
The Economic Toll of Headache Disorders
Migraine and other headache disorders cost the U.S. economy billions of dollars
annually—not only in direct healthcare expenses but also in lost productivity, disability claims,
and emergency room visits.
Lost Productivity & Workplace Impact
● Migraine alone accounts for over 157 million lost workdays annually in the U.S.,
leading to $78 billion in lost productivity. (Gooch et al., 2017)
● Many people with chronic headache disorders struggle to maintain full-time
employment, and disability benefits for headache disorders remain difficult to obtain.
The Burden of Emergency Room Visits
● Headache is one of the top reasons for ER visits in the U.S., with over 8 million
headache-related emergency room visits each year (source: AJMC 2022).
● Many patients turn to the ER because they lack access to headache specialists or
because their attacks become unmanageable due to insurance roadblocks in
accessing effective preventive treatments.
● ER care for headache disorders is often inadequate, with patients frequently receiving
opioids or ineffective treatments rather than evidence-based headache
(source: Neurology Journal).
● Many patients report experiencing stigma in the ER setting. The ER is often a very last resort for a person living with a headache disorder.
Out-of-Pocket Costs for Patients
● Patients with migraine and headache disorders pay thousands of dollars annually
in medications, specialist visits, imaging, and emergency care (source: JAMA
Neurology).
● Many must self-pay for treatments not covered by insurance, leading to financial
hardship and medical debt.
● Many newer, FDA approved or cleared treatments for headache disorders are not covered by insurance, including non-pharmacological treatments such as neuromodulation devices.
People living with chronic pain also often critically need access to psychology and psychiatry services because of the impact pain has on their mental health but too often such services are not covered by insurance or otherwise inaccessible.
Why We Need Change
Despite the enormous human and economic burden of migraine and headache disorders, these conditions receive a fraction of the funding and policy attention given to other neurological diseases (source: Shapiro, 2020).
- We need more research understand these conditions and to develop better treatments.
- We need policy reform to expand access to specialists, eliminate step therapy delays, and address co-pay accumulator issues.
- We need to prioritize preventative treatment of headache disorders in clinical careto reduce emergency room reliance and economic losses.
This installation is a critical step toward changing the conversation—and demanding action.
1.Amiri P, Kazeminasab S, Nejadghaderi SA, Mohammadinasab R, Pourfathi H, Araj-Khodaei M, Sullman MJM, Kolahi AA, Safiri S. Migraine: A Review on Its History, Global Epidemiology, Risk Factors, and Comorbidities. Front Neurol. 2022 Feb 23;12:800605. doi: 10.3389/fneur.2021.800605. PMID: 35281991; PMCID: PMC8904749.
2. Cen, J., Wang, Q., Cheng, L. et al. Global, regional, and national burden and trends of migraine among women of childbearing age from 1990 to 2021: insights from the Global Burden of Disease Study 2021. J Headache Pain 25, 96 (2024). https://doi.org/10.1186/s10194-024-01798-z
3. https://report.nih.gov/funding/categorical-spending#/ Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) Table Published: May 14, 2024