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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account 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 committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition 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 teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a