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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around one eye that peaks within minutes and continues for up to 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 an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks 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 symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a