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It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate 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 throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a