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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. Then came quick stabs, like electric shocks. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

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

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 extracted because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a