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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. 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 social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began 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 finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a