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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. Then came quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major 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 comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a