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It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term 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 attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family 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 attack inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a