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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties 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 portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a