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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most 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 misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a