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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. Then came quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small 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 facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a