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It was a overcast 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 erupted behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, 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 teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a