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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around unpredictable attacks took its toll. 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 family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value 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 described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records propose unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a