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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

Cluster headaches were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, 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 advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a