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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a