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It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that persists up to three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a