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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook 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 clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation 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 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 comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a