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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, 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 symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidelines on management 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 a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are handled with acute treatment alone. More prolonged or more intense bouts 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 area of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a