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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support 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 office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published 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 pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.

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

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a