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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around a single eye that persists for three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by international 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 that supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a