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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

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

Cluster headaches often start with severe discomfort behind one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a