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It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind a single eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children 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 recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with occasional episodes 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 nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a