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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support 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 office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family 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 recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists 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 attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a