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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four 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 pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain 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 paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a