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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly 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 incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

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

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a