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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came rapid stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a