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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly 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 steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major 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.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a