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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated 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 worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced 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 misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a