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It was a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent 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 hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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

Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. 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. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a