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It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain behind one eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks usually begin with abrupt, severe pain around one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a