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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches typically start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack 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 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global medical committees 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 head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes 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.

In spite of such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a