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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris'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 had four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a