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It began on a overcast Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain behind a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts 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. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate 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 throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global 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 that delivers blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a