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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often 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. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent 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 greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a