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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer 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 talked them through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a