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It began on a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical medical records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a