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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky 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 simple freedoms 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 facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a