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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick jolts, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain around a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis 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 recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block 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