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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically start with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly disliked 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 paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a