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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind one eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw 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 teens, like several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms 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 portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming 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 triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a