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It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain around one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, severe pain focused on a single 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 accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment advise that sufferers 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 soothes the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a