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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came quick shocks, like electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers 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 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 dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first 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”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, 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 twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a