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It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my right eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable 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 looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some observers would describe 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 physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 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 molars extracted because dentists misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a