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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks 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 occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally 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 office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

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

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, 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 twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a