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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain 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 children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 documented throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor 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 vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a