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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain around one eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually 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 relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain 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 family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a