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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around one eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term 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 spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a