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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several causes, made things more intense. 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. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly hated 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 most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent 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, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute 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 discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a