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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. Then came quick stabs, like electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that peaks 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 facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes 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 found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a