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It was a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid stabs, similar to electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, 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 drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent 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 hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a