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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs 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 diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a