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It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a