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It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. This was followed by rapid jolts, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated 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 most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified 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 major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled 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. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a