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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around one eye that persists for several hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic 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 cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified 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 brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some people.

But leading specialists argue 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 length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a