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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

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

Cluster headaches often begin with severe pain around a single eye that lasts for several hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, 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 a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support 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 moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend 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. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a