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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came quick shocks, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive 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 recognised by global 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 which supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, 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 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a