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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she 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.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a