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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started 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 symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 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 diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific 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 believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are managed with abortive therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a