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It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks 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 symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple 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 portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

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

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a