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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. Then came rapid stabs, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a