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It began on a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms 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 portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in treating the condition explain 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 brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing 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 primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists 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 length of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute therapy only. More prolonged or more intense periods require preventives 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 skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a