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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. Then came rapid shocks, like lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily 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 seasonal cycles; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works 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 long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a