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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl 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 adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, 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 steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions 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 speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a