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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually 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 hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant 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 Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a