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It was a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, 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 family often interpreted her attacks as drunken 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 found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured 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 pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are handled with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, 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 pain is that reduces nerve signals.

The official guidelines need updating to reflect a