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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated 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 took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a