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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that persists for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, 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 international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from 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 molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a