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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 class, when a sharp pain erupted behind my one eye. This was followed by rapid stabs, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a