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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came quick stabs, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four 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 unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around a single eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky 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 small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Historical healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a