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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She particularly disliked 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 paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally 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 key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, 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 reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a