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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around one eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater 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 reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a