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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind a single eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly hated 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 robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a