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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over 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 frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, 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; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, 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 small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a