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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: 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 neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially 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 worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international 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 which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines 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 determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a