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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst 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 episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, 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, published 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 deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a