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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first 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”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, 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 advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, 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 pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of 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 signals.

The national guidelines need revising to reflect a