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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable pain took its toll. She particularly 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 paralysis caused by the worst 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 portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a