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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate 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 GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around one eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky 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 major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a