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It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go 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 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a