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It began on a dreary Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

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

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman 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 management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with acute therapy 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 greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a