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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis 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 obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first 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 afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a