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It was a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort around one eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes 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 bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky 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 simple freedoms 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 documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a