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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, 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 occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long 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. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, 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 school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading experts in treating the condition note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one 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 seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a