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It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. 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 inability to plan life around unpredictable pain took its toll. She especially 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 robs 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 throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

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

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a