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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a