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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes 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 condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls 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 partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for 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 recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance 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 treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. Longer or more intense 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 procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a