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It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. Then came quick stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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

Ancient healing texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. 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. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a