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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken 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 found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, 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 robs you of the simple 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 portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

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

The disorder were only formally classified by global medical societies in the late 1980s. 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 brain. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks 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 early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are managed with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a