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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks 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 her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life 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 family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing 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 attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short bouts with occasional attacks are managed 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 cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a