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It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning 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 authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international 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 brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a