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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding 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 attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major 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 Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician 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 vanishing daily at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing 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 conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a