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It was a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several 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 family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis 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 recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk 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 happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a