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It began on a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid shocks, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, 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 appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a