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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by quick jolts, like electric shocks. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

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

Nevertheless, the failure to plan daily activities around unpredictable pain 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 most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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

Ancient healing texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity 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.

Despite such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. 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 reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a