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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came quick shocks, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four 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 aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind one eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate 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 described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, 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 underwent four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a