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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, 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 robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, 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 prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a