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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around one eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support 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 office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which 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 triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, 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 reduces nerve activity.

The official guidelines need updating to reflect a