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It began on a dreary Monday morning in the autumn of 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 rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, 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 neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a