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It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain 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.

Cluster headaches typically begin with severe discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began 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 condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

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 left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

National guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a