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It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. 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 took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children 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 obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a