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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, 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 February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

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

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value 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 documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a