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It began on a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain erupted behind my right eye. It was followed by quick shocks, like electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Attacks typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

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

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a