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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a