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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists up to three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding 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 found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

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 most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming 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 precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a