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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground 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 several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a