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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

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

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, 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 symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially hated 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 steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a