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It was a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. It was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually 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, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, 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 value 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 history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a