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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by rapid jolts, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding 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 took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris'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 had four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a