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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several 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, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent 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 two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives 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 exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, 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 steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a