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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for 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 remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “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 diagnosing the disorder. A detailed 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 characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes dentists 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 attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

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

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a