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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize life around erratic attacks took its effect. She particularly disliked 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 steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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

Historical medical records propose unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by global headache committees 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 head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a