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It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, 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 intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after 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 remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment only. More prolonged or more severe 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 side of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a