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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a