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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. 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 clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a