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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate 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 described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent 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.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

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

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a