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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater 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 early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a