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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang 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 graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support 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 clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after 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 remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, 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 time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment alone. Longer or more intense bouts require preventives 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 skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a