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It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, like electric shocks. As the school day came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient 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 her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable 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 simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity 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.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough 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? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a