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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort around one eye that persists for several hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began 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 condition deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate 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 time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, 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 freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a