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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by quick shocks, like lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks 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 family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a