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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. This was followed by quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort around a single eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, 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 remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

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

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a