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It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, 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 time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate 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 the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a