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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. Then came quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground 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, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, 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 time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

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

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a