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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick jolts, like electric shocks. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a