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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize 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 cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man'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 underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 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 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a