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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer 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 her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis 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 common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a