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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

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

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional 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 attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. 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 precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a