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It was a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable pain took its toll. She especially hated 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 steals from you of the small liberties 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 portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a