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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs 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 portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a