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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by quick stabs, like electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate 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 diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support 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 moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities 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 cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 described across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a