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It was a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick shocks, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around one eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with sudden, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning 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 earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in treating the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation 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 progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block 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