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It was a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. Then came quick shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. 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 train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer 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 worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient 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 characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers 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 believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a