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It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a