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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain erupted behind my right eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around one 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 tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches 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 reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a