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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came quick jolts, like electric shocks. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

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

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for 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 obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a