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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that persists up to three hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes 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 childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated 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 incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century 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 explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a