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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind a single eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a