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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent 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 for several hours.

About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining 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 description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, 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 advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing 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 history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches 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 extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a