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It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites 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 patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks 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 found office 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 national neurology center.

Still, the failure to plan life around unpredictable 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 cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European 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 occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. 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 head. Prominent specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

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

But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a