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It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally 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 moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, 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 recovered.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a