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It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. 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 calm advisor talked me through oxygen treatment and medication until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a