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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners 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 handled with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a