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It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain around a single eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

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

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international headache 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 which delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “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 the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a