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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding 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 took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated 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 incapacitation caused by the worst 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 episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major 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 felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a