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It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, 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 small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a