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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. This was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

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 intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a