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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes 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 symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 major 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 Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a