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It was a dreary Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a