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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a