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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. 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 commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a