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It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid 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 attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

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

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a