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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, 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, identification remains slow. 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 four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a