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It was a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. More prolonged or more severe 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 cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a