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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

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

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches 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 teeth extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a