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It was a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

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

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major 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.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a