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It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities 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 looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. 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 surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a