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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

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

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks usually start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined 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 broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

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

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 liberties 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 portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the results 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 prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a