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It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by rapid shocks, like electric shocks. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

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

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority 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 misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a