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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, 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 simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists released the results 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 prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient 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 certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled 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. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a