Migraine, cluster headache, trigeminal neuralgia, and more than 200 other headache disorders affect tens of millions of Americans. Too many people are still dismissed, delayed, or left to figure it out alone. It does not have to be that way.
Migraine and other headache disorders are neurological diseases. They are not personal weakness, overreaction, or something people should be expected to push through.
There are more than 200 headache disorders, including migraine, cluster headache, trigeminal neuralgia, New Daily Persistent Headache, post-traumatic headache, and many others. Each has its own symptoms, causes, and treatment needs.
For some people, headache disease means hours or days of disabling attacks. For others, it means pain that comes without warning, returns in cycles, or never fully goes away. For too many, it also means years of being dismissed before they finally receive the right diagnosis and care.
But these conditions are real. They are treatable. And people living with them deserve to be believed, supported, and connected to care.
Headache disorders involve more than head pain. Many of the most disabling symptoms have nothing to do with where it hurts. If you live with any of these symptoms, talk to a doctor.
Nausea or vomiting
Visual disturbances or aura
Light and sound sensitivity
Allodynia (sensitivity to touch)
Vertigo or dizziness
Temporary aphasia (difficulty speaking)
Despite how common headache disorders are, the systems built to diagnose, treat, and research them have not kept pace. The result is missed diagnoses, delayed care, and needless suffering.
There are fewer than 900 headache specialists certified by the United Council for Neurologic Subspecialties (UCNS). That works out to roughly one specialist per 44,000 patients living with migraine and other headache disorders. Many regions of the country have no specialist within reach.
In 2023, the National Institutes of Health invested approximately $104 million in migraine and headache research. That is roughly 0.2 percent of the NIH budget, or less than $3 per person living with migraine. By disease burden, headache is one of the most under-funded categories in federal research.
Many insurance plans require patients to fail first on older, less effective medications before they can access newer treatments. For headache disorders, step therapy can mean years of disease progression and worsening symptoms before a patient gets the medication their doctor recommended.
Copay accumulator policies prevent manufacturer copay assistance from counting toward a patient's deductible. For people living with chronic, expensive conditions like headache disorders, this can make treatment unaffordable even when assistance programs exist.
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.
Headache disorders cost the U.S. economy approximately $78 billion each year. Migraine alone accounts for more than 157 million lost workdays annually.
More than 8 million headache-related emergency room visits happen each year in the United States. Many are driven by patients who can't access ongoing specialty care.
Patients with chronic headache disorders pay thousands of dollars in out-of-pocket costs each year for medications, devices, specialist visits, and emergency care.
Headache disease is not one story. It is a community of patients with different diagnoses, all of whom deserve recognition, research, and care. Below are some of the more common primary and secondary headache disorders.
Migraine
Migraine is a neurological disease that affects approximately 40 million Americans. Symptoms can include throbbing head pain, nausea, vomiting, visual disturbances or aura, sensitivity to light and sound, and difficulty speaking. Migraine attacks can last from hours to days. Migraine is the leading cause of disability for young women in America and impacts 1 in 5 women, 1 in 16 men, and 1 in 11 children.
Cluster headache
Cluster headache causes severe, sudden, recurrent attacks of pain typically around one eye or temple. Attacks can last from 15 minutes to several hours and can occur multiple times in a single day. Cluster headache is sometimes called the suicide headache because of the intensity of the pain. It is one of the most painful conditions known to medicine and is frequently misdiagnosed for years before patients get accurate care.
Hemicrania continua
Hemicrania continua is a chronic, persistent headache disorder that causes constant one-sided pain, with periodic exacerbations. It belongs to a group of conditions called trigeminal autonomic cephalgias, which involve symptoms like eye redness, tearing, and nasal congestion on the same side as the pain. Hemicrania continua often responds to a specific medication, but is frequently missed in diagnosis.
Paroxysmal hemicrania
Paroxysmal hemicrania causes short, severe attacks of one-sided head pain that occur multiple times per day, typically lasting 2 to 30 minutes. The condition often comes with eye redness, tearing, or nasal symptoms. Like hemicrania continua, paroxysmal hemicrania often responds to a specific class of medication when correctly diagnosed.
SUNCT and SUNA
SUNCT and SUNA refer to short-lasting, severe one-sided headache attacks accompanied by autonomic symptoms like eye tearing or nasal congestion. Attacks are brief but can occur many times per day. These conditions are rare, often misdiagnosed, and notoriously difficult to treat.
New Daily Persistent Headache (NDPH) NDPH is a debilitating condition in which constant headache begins on one specific day and never stops. Patients often remember the exact moment the pain started. NDPH is poorly understood, and there are no FDA-approved treatments for the condition. Research investment is urgently needed.
Chronic tension-type headache
Chronic tension-type headache involves frequent or constant pressing or tightening pain, usually on both sides of the head. While tension-type headache is the most common type of primary headache, the chronic form can be highly disabling and is often under-treated, particularly when patients are told to push through it.
Post-traumatic headache
Post-traumatic headache is triggered by head injury and can persist for months or years after the initial trauma. It is common among veterans, athletes, accident survivors, and 9/11 first responders. Post-traumatic headache is often under-recognized in primary care, despite being one of the most common long-term symptoms of traumatic brain injury.
Spinal CSF leak
Spinal CSF leak occurs when cerebrospinal fluid leaks from the membrane around the spinal cord. The classic symptom is a positional headache that worsens when standing and improves when lying down. Spinal CSF leak is frequently misdiagnosed as migraine for years before correct identification.
Trigeminal neuralgia
Trigeminal neuralgia causes sudden, severe, electric-shock-like facial pain. Attacks can be triggered by light touch, eating, or even cold air. Patients describe it as lightning across the face. The condition is one of the most painful known to medicine and often requires specialized treatment.
Occipital neuralgia
Occipital neuralgia involves piercing or throbbing pain that begins at the base of the skull and radiates upward across the back of the head. It is caused by irritation of the occipital nerves and can be confused with other types of headache.
Headache disorders touch every demographic. They affect children and adults, women and men, every race and every region. But the burden is not evenly distributed. Women carry the largest share of disease impact, particularly during their reproductive years. Communities of color and rural patients face systemic barriers to specialty care. Children and adolescents are routinely under-diagnosed and under-treated.
The result is a disease that is common, treatable, and still chronically under-served. Closing the gap requires research, workforce investment, and policy change. The HEADACHE Act would begin to address each of those areas.
An installation by the Alliance for Headache Disorders Advocacy and The Headache Alliance, raising visibility and demanding action on migraine and headache disorders.
