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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried 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 again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, 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 seasonal cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. 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.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis 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 major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

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

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a