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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around one eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a