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It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a