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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence 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. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest description 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 sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined 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 official guidelines need revising to reflect a