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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting 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 intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a